Phindile Sithole-Spong says that while being HIV positive is hard because of the stigmas surrounding the disease, but she remains hopeful of starting a family one day. (Clarissa Sosin)
"As a young person, coming out about your HIV status to anyone is an emotional thing," says Phindile Sithole-Spong.
She's wearing a long, blue-grey floral dress. Her make-up is done carefully. And she's confident.
"It's a stressful journey and I feel like a lot of the time people undervalue how strong you have to be and how prepared you have to be because it's not something you take lightly," she says. "The possibility of rejection is so real."
Sithole-Spong has everything going for her. She owns her own media company. She loves a glass of good red wine and she can cook up a storm. She's been a youth ambassador to a United Nationals conference in Washington, DC.
She's come a long way.
When she was 19, she discovered that she had been born with HIV after she fell ill and landed in hospital.
"It was quite traumatic for me; not only the fact that I was HIV positive but [also that] I had a really low CD4 count [a measure of the strength of the immune system. The higher it is, the healthier the person is. A normal CD4 count is between 400 and 1600, according to online HIV information service Aidsmap].
"My CD4 count was two, so I had full-blown Aids at the time," she recalls, sitting in a sunny room at the Parkhurst home in Johannesburg, she shares with her adoptive mother. Her biological mother died when Sithole-Spong was eight years old.
"I had heard about HIV and seen the campaigns. But I never ever thought it would happen to me. I thought I had been educated enough about it; it was never something that came up," says Sithole-Spong.
"Finding out was emotionally and physically exhausting."
Having had only one sexual partner at the time, Sithole-Spong was catapulted into a world of confusion, wondering how she could have been infected. She told her boyfriend that she was HIV positive just hours after she found out. His test came back negative. Doctors then realised that she had been born with HIV.
"Even though he was comfortable with it and was there for me, our relationship ended because I was struggling to come to terms with my status," she says. "HIV is not just a physical manifestation but it's psychological as well and it does take a toll on you – whoever you are."
Sithole-Spong says she took "time out" from dating to "deal with the emotional implications" of living with HIV before venturing into her next relationship. She had decided early on that she would tell everybody she got involved with about her status. Fortunately, she had the "luxury of having doctors who spoke openly" to her about disclosing her status and supported her.
When she was in her second year at the University of Cape Town, Sithole-Spong publicly disclosed her status at an event hosted by the institution.
"I dont think my love life has changed much at all; I guess because I'm so public with my status. People already know [I'm HIV positive] before they meet me," she says.
"The sooner someone knows, the better for both of you. Its not like you stop having sex when you find out you are positive."
According to the World Health Organisation, the risk of HIV transmission in serodiscordant relationships, in which one partner is infected with HIV and the other is not, is significantly reduced when the HIV-positive partner is on antiretroviral treatment, regardless of their immune status. HIV treatment is usually only introduced once the immune system is below a certain point.
Normal love life "elusive"
However, a counsellor with the HIV organisation loveLife, Dorcas Mshayisa, says although "antiretroviral therapy reduces the risk of transmission to a sexual partner, what is considered a normal love life remains elusive [for people living with HIV].
"Support groups play an important role in educating and giving support to people who are living with HIV. Ongoing counselling and having conversations with your partner help one to accept his or her status and to love the person for who they are, not what they have."
But Sithole-Spongs choice to speak candidly about her status and her sexuality has drawn some criticism. She says she has been confrontated by people who believe that it is wrong of her to have sex or engage in "normal people behaviour".
"If people dont take it well I dont take it personally, I dont hate or dislike them for it because I understand that a lot of people dont understand the virus. And people normally fear what they dont understand.
"I think some of the biggest fears people have about going into a relationship with someone who is positive is getting infected with the virus and the stigma around HIV. Because stigma doesn't only happen to the infected person, it also happens to the people around you.
"So if you are dating someone who is HIV positive, people might deduce that you must be positive too," she says. Some relationships end because families or communities oppose them.
Sithole-Spong says that it is often the people living with HIV who isolate themselves because they think their communities won't accept them.
"The biggest problem with stigma is self-stigmatisation and I think that's really where it starts. People who live with HIV are the ones to judge themselves first by thinking they are not good enough to date someone who's negative. I think it's the HIV community itself that has a problem with the virus.
"I also have my moments of insecurity about my status and sometimes you just need or want someone who understands that there are ups and downs," she says.
Romantic by nature
But there is little that can keep this self-confessed romantic down.
"I would love to get married someday and have a soccer team of kids and the course of my treatment has been geared towards me having children. I want a big family and it's a very real possibility."
The dream of finding true love is shared by American singer and HIV activist Jamar Rogers, who has been living with HIV for seven years. He made headlines last year when he disclosed his status on the singing reality show The Voice.
( Jamar Rogers (Madelene Cronjé))
Rogers spoke to Bhekisisa about love, life and living with HIV while in South Africa earlier this year.
"Dating is probably one of the hardest factors of living with HIV," he said. "That moment when you decide to tell that girl or that guy that youre interested in that you are HIV positive your stomach clenches up, your hands get clammy and theres a fear of rejection there.
"There's always that risk that theyre not going to be cool with it – that they're going to freak out. And they may smile and say that it's okay and then never call you again. These are all instances that I have faced."
He said that, although American society is advanced about a lot of things, HIV isn't one of them as it is considered to be a virus that mainly affects homosexuals and drug addicts. This made it difficult for him to talk about his status.
When Rogers found out at the age of 24 that he was HIV positive he had a CD4 count of five and Kaposis sarcoma [an Aids-related cancer].
The 32-year-old said that being diagnosed with HIV was the wake-up call he needed to clean up his life. It was at that point, he said, that he called his mother and asked her to help him to get his life back on track.
"I was an avid crystal meth user. I started using at the age of 18 and because of my drug addiction, I wasn't just sharing needles, I was also into prostitution," he said.
"I was definitely living a very high-risk lifestyle but when the doctor came back and told me I had HIV, I was completely shocked. I don't know why I thought that I was discounted from that."
Rogers said that, before falling ill, he had only been tested for HIV once despite the fact that he was in a relationship at the time.
The World Health Organisation estimates that only 40% of people with HIV know their status. The organisations figures show about half of HIV-infected people in long-term relationships have HIV-negative partners. According to loveLife, most new HIV infections occur among young adults and adolescents.
The United Nations National Programme on HIV and Aids report says that 35.3-million people were living with HIV in 2012, "an increase from previous years as more people are receiving the life-saving antiretroviral therapy".
Released this week, the report states that new infections had decreased by 33%, from 3.4-million in 2001 to 2.3-million in 2012. The number of Aids-related deaths was 1.6-million, down by 30% since 2005.
The report found that the persistent stigma around the epidemic delayed HIV testing and encouraged nondisclosure to partners.
loveLifes Mshayisa said the stigma also posed a challenge to HIV treatment and prevention efforts. However, she said, as HIV services improve and the disease proves to be manageable, "attitudes will change, and denial, stigma and discrimination will rapidly be reduced".
Rogers said he believed that, over time, people will come to terms with the epidemic and those who are HIV positive will see that "as long as they take care of themselves they can have a healthy dating life, a successful career and even start a family".
People living with HIV are mostly scrupulous about getting check-ups. (Delwyn Verasamy, M&G)
Research studies show that people with HIV who are on antiretroviral (ARV) treatment now live almost as long as their HIV-negative peers.
But this gain in life years also has a downside: it has put HIV-infected people at risk of developing non-communicable diseases (NCDs) such as diabetes, heart disease and high cholesterol, which normally only appear in older people.
There is an "extra epidemic" on the horizon, according to the health department's head of noncommunicable diseases, Melvyn Freeman.
"People over the age of 45 have a higher risk of developing these conditions and many people with HIV now live far beyond that age."
According to Freeman, if NCDs are not addressed properly, the financial cost to the health system will be "massive".
A 2011 paper, published in the medical journal Aids, estimated that HIV prevalence (the proportion of a population with HIV at a designated time) in people over 50 will "nearly double in the next 30 years, whereas the fraction of HIV-infected patients aged over 50 years will triple in the same period".
Freeman said it's expensive to treat chronic conditions such as NCDs.
"For example, once you need hypertensive medication, you're probably going to need it for the rest of your life. One pill may be cheap but a lifetime of medication is extremely expensive."
The longevity of HIV-infected people may be compromised by the generally unhealthy lifestyles of South Africans, resulting in them getting fat, said Francois Venter from the Reproductive Health and HIV Institute at the University of the Witwatersrand. "We have some of the highest rates of obesity in the world," he said.
Obesity, especially a disproportionate accumulation of fat around the abdomen, places one at a much higher risk of developing a number of medical conditions, including diabetes and cardiovascular disease, according to Jeffery Wing, a medical doctor and diabetes expert working at Charlotte Maxeke Hospital.
He said that this is often more pronounced in people living with HIV as they are very "weight sensitive" because being underweight is a well-documented side effect of being infected with the virus.
"They tend to push the calories more than patients without HIV."
The Human Sciences Research Council's 2013 health and nutrition survey revealed that almost half of South African women are obese (40.1%) and 11.6% of men.
Apart from the fact that people with HIV are living longer and therefore may develop age-related illnesses, there is also a body of research emerging that suggests that HIV medication, as well as the virus itself, may put HIV-positive individuals at a higher risk of developing some chronic conditions than the general population and at a younger age.
According to a Chris Hani Baragwanath doctor and researcher, Colin Menezes, the ARV drug, Stavudine, is associated with the early onset of several NCDs.
"What I saw [in my study] was the metabolic consequences - things we're concerned about - like diabetes and dislipidemia [high cholesterol]," he said.
Stavudine, also known as d4T, was part of the state's first-line regimen until 2010, when the country adopted the World Health Organisation's guidelines to substitute it for the less toxic drug Tenofovir.
However, when public-sector clinics run out of Tenofovir - there have been many documented stock-outs this year - patients receive Stavudine as a replacement, Menezes said. According to him, patients with kidney failure are also switched to Stavudine.
Menezes said, although he is seeing fewer cases of opportunistic infections like tuberculosis (TB), he's seeing more patients as a result of "the side effects of ARVs, and clinicians and patients should be aware of this".
Thandi Nyawo, a secretary from Mpumalanga, took Stavudine for six years and developed a common side effect - fat in the body is redistributed largely around the waist, making it disproportionately large. After four years on Stavudine, she was diagnosed with diabetes but doesn't know what caused it.
"[The doctors] don't know [what caused my diabetes]; they say maybe it's a family thing but at home no one has got diabetes. Just me," she said.
According to Wing, "about 30% of patients on ARVs get it [fat redistribution], which we know is a very strong risk factor for developing diabetes."
Because Nyawo does not have a family history of diabetes, which would make her more vulnerable to the condition, Stavudine could "very possibly" have caused her diabetes, Menezes said.
Although Stavudine has been associated with much of the weight redistribution side effect, Wing said other ARVs, particularly protease inhibitors that are used in second-line treatment, can also cause it. Patients go on second-line treatment once they have become resistant to the initial regimen.
HIV itself, because it is an inflammatory condition, can also place one at risk of developing diabetes, according to Wing.
"Inflammation produces inflammatory molecules, which cause insulin resistance in the various tissues, so poorly controlled HIV is also associated with a higher diabetes risk."
However, Venter cautions that this is a "theoretical area" of research.
"It's possible [that HIV, ARVs or a combination of the two can elevate the risk of developing NCDs] but we don't know for certain what the impact of HIV is going to be on these diseases, other than the fact that people are living longer and are, therefore, more likely to get them."
According to Freeman, diseases lower the body's resistance to fight off other illnesses. "So diseases in themselves are mechanisms which change the body's way of dealing with other sicknesses."
For example, studies have shown that diabetic patients are three times more likely to contract TB but the "exact mechanism" through which this happens is still not clear. A TB patient is also at a higher risk of developing diabetes.
According to the World Health Organisation, South Africa has the third-highest TB burden in the world, with more than 70% of TB patients also living with HIV.
But, said Venter, being HIV positive and on treatment could also be an advantage regarding NCDs. He said there is an "absolutely fascinating development": where people living with HIV are actually living longer in some countries because they are managing all of their conditions better than the general population.
"There are studies in the Unites States, Europe and Uganda which show that patients are actually getting [their NCDs] sorted out earlier rather than later and are doing very well."
According to Venter, the average HIV-negative person doesn't access health services often enough to detect these conditions at an early stage before complications arise.
"Personally, I never get my cholesterol or blood pressure checked when I'm supposed to but, once you're in the healthcare system getting your ARVs, checking these things is really easy."
Wing said that, because HIV-infected individuals will soon qualify for drugs when their CD4 count (a measure of the strength of the immune system) is below 500 (unlike the current threshold of 350), many more patients will be on treatment, which will significantly increase the costs to the health system.
"The same concept is being applied to diabetes so young prediabetic patients may qualify for drug treatment earlier rather than just be advised to change their lifestyles."
Freeman said that the government can only do so much and that patients need to take some responsibility for their health.
"The minister has said that, if the National Health Insurance system is going to work, we need a healthy population. HIV is a massive burden on the fiscus. You don't give antiretroviral therapy for a year or two; you give it for life. Unable to afford user fees or to reach faraway health centres, the same is true for NCDs. You can just imagine the burden chronic diseases place on the health system."
by Jessica Berman
New research suggests that mega-doses of vitamin D, the so-called “sunshine vitamin,” may help fight both tuberculosis and reduce the risk of death from HIV, the virus that causes AIDS.
An estimated 1.5 million people die each year of tuberculosis amid concerns that the disease is rapidly becoming drug resistant. Now, a new study suggests TB treatment could be significantly enhanced with the addition of vitamin D to the regimen.
Researchers at Queen Mary University in London studied 95 tuberculosis patients. All received the standard antibiotic treatment, but some were given a supplement of a very high dose of Vitamin D, about 10 times the average dose.
Investigators led by Adrian Martineau found that the TB bacterium cleared from those in the vitamin D group in an average of 23 days - approximately two weeks sooner than those on antibiotics alone.
Martineau says vitamin D - the so-called 'sunshine vitamin' - appears to bolster the body’s natural defenses.
“But a second and interesting effect is that vitamin D also dampens down potentially harmful inflammatory responses in the lung that’s been implicated in lung damage," said Martineau. "So, it also accelerates healing of cavities caused by the TB bug.”
The tuberculosis bacterium causes cavities to form in the lungs in response to inflammation, which is part of the body’s immune response. The microbe hides in these pockets. Martineau suggests that reducing inflammation helps heal the cavities more quickly, causing less lung damage and helping patients clear the infection in a shorter period of time.
Before antibiotics, TB patients underwent so-called heliotherapy or “forced sunbathing” to increase their levels of vitamin D. Martineau’s finding appears to validate the old-fashioned therapy.
“We’re very excited about these positive results," he said. "But what we need to do now is go ahead and repeat the study in a larger number of patients. And if that also shows a positive effect, then we could be in a situation where we could begin to start recommending adjunctive vitamin D in tuberculosis treatment.”
Vitamin D levels have been shown to be reduced or very low in individuals with a number of chronic ailments, including AIDS.
In another new study, researchers in Tanzania report that HIV-positive individuals with vitamin D deficiency became sicker and were twice as likely to die as those with sufficient or normal levels. The researchers looked at vitamin D levels in 1,100 men infected with the AIDS virus between 2006 and 2010.
Their study on HIV and vitamin D was published in the journal PLoS One. An article by Adrian Martineau and colleagues on the treatment of tuberculosis with supplemental vitamin D can be found in Proceedings of the National Academy of Sciences.
Probiotic Supplementation Could Potentially Decrease Resistance, Micronutrient Deficiencies, Viral Replication and Immune Suppression
Gastrointestinal (GI) health is proving to be a vital, though often ignored, component of HIV infection. Recent research presented at the 7th International AIDS Conference on HIV Pathogenesis, Treatment and Prevention (IAS 2013) that took place this past July in Kuala Lumpur, Malaysia showed that microbial translocation and the damage done to gut-associated lymphoid tissue (GALT) during primary HIV infection has a dramatic effect on the pathogenesis of HIV, including the disruption of microflora, resulting in ongoing and damaging inflammation. While more research on the effects of HIV on the GI system is sorely needed, the consequences of sequestration on the National Institutes of Health (NIH) budget, along with the growing competition to prioritize directions in therapeutic investigation, ranging from viral host restrictive factors to preventive vaccines, makes putting anything else on the table an enormous challenge.
The data being presented on addressing microbial translocation, HIV-associated enteropathy and gut inflammation is compelling. HIV-associated enteropathy often accounts for diarrhea and malabsorption in patients who lack an identifiable cause and includes mucosal dysfunction as a defining characteristic. HIV-associated enteropathy results in microbial translocation and subsequent chronic inflammation as well as malabsorption, which may result in drug resistance.
HIV-associated enteropathy affected a high percentage of people with HIV in the pre-HAART (highly active antiretroviral therapy) era and continues to be a problem for some even in the presence of HAART. HIV-associated enteropathy can cause weight loss and structural and functional damage to the GI tract. Despite effective treatment with HAART, it continues to be drastically underestimated.
The only available drug for HIV-related non-infectious diarrhea is Fulyzaq. Fulyzaq, made by Salix Pharmaceuticals, was approved by the U.S. Food and Drug Administration (FDA) in 2012. In a 374-patient study, incidences of diarrhea were reviewed over a 20-week period. Results found that 17.6% of patients taking Fulyzaq had two or less watery bowel movements per week compared to only 8% of patients on placebo. Fulyzaq was found to be less effective in African Americans who participated in the study. Due to continual production issues, this drug is not widely available and appears to only help a small number of people.
Few other potential treatments for HIV-associated enteropathy are currently being studied despite the great need for interventions. One study, however, that showed promise was published in the journal AIDS (Asmuth et al., 2013) and presented at the 19th International AIDS Conference (AIDS 2012) last July in Washington, DC and the 20th Conference on Retroviruses and Opportunistic Infections (CROI 2013) in March of this year in Atlanta, GA. Dr. David Asmuth reported on a pilot study of the effects of serum-derived bovine immunoglobulin / protein isolate (SBI), EnteraGam, made by Entera Health, on patients with HIV-associated enteropathy. According to previous studies in porcine and murine models, EnteraGam has been shown to improve gut health and function and reduce markers of inflammation.
All eight participants in this study were on HAART. Administration of EnteraGam improved GI absorption and increased the density of CD4 T lymphocytes in GALT. Although markers of microbial translocation remained unchanged, D-Xylose, a direct measure of proximal small bowel function, suggested improvement in diarrhea in seven out of eight study participants. The utility of EnteraGa was significantly associated with increased intestinal CD4+ cell counts and function and demonstrated evidence of intestinal repair in patients experiencing HIV-associated enteropathy. A longer, larger, blinded study is said to be forthcoming on this medical food.
Another approach to addressing HIV-associated enteropathy is the utility of probiotics. AIDS Healthcare Foundation (AHF) conducted a study on GanedenBC30 that found that supplementation with the probiotic increased CD4+ cell counts.
"We are learning more and more about the interaction between our gut and our immune system. It is such complex machinery that keeps bacteria inside the intestines and, in a majority of the cases, very tightly controlled. Occasionally it gets out of control and that's why people get illnesses. There is more and more evidence that most likely some fragments of bacteria occasionally escape -- they make their way to our systemic circulation, our bloodstream -- and, of course, being a foreign object, the body will try to attack it and neutralize it. That leads to inflammation," Dr. Homayoon Khanlou, M.D., chief of medicine at AHF and lead investigator of this pilot study, stated in an article which appeared in A&U magazine.
Inflammation in the gut can cause bone loss and probiotics can improve bone density. A new study from Michigan State University sponsored by the NIH published in the Journal of Cellular Physiology found that probiotic supplementation utilizing lactobacillus reuteri, a probiotic shown to reduce inflammation, produced healthier bones. Lead author Dr. Laura McCabe, professor of physiology and radiology at Michigan State University, said, "We know that inflammation in the gut can cause bone loss, though it's unclear exactly why."
Studies by the AIDS Clinical Trials Group (ACTG) on new interventions for HIV-associated enteropathy, as well as other HIV associated GI conditions are long overdue. With the formation of the Delaney AIDS Research Enterprise at the NIH, the opportunities to advance research on gut inflammation, its effect on HIV pathogenesis and HIV's mechanisms for evading viral host restrictive factors have never been better.
With more data being generated on interventions such as EnteraGam and GanedenBC30 in HIV patients, the real question confronting state legislators is ensuring access to care by implementing exception to policy in public health insurance programs such as Medicaid. These supplements could be made available to patients through state enteral formularies. In these times of sequestration, cost-effective measures are of more importance than ever. Therapeutic supplementation has proven to be among the best of these interventions.
An unspoken complication of HIV-associated enteropathy is the disruption in treatment pharmacokinetics, which is the difference between successful and unsuccessful treatment. As the efficacy of these drugs is dependent upon nutritional status, the subsequent malabsorption results in varying levels of the drug in the blood that could predictably result in treatment failure.
HIV-associated enteropathy may be one of the driving factors behind the deeply disturbing data presented at AIDS 2012 by the U.S. Centers for Disease Control and Prevention (CDC) that three out of every four people living with HIV in the U.S. are not able to achieve durable viral suppression. Addressing this alarming condition in a cost-effective manner is of critical importance to achieving widespread viral suppression, which in turn would decrease the number of new HIV infections.
A march for AIDS housing at the 2008 International AIDS Conference in Mexico City
A new study shows that housing and food are the biggest predictors of health than for people with HIV.
The study was conducted by University of California at San Francisco on 288 homeless men with HIV over a six year period (a similar study was done last year with homeless women and had similar results).
The SF Gate reported on the research study, and noted “Lacking basic necessities had a larger negative health effect than drug abuse, the virus in their blood or lack of treatment. Even among patients who were getting drug therapy for their HIV, the effects of being homeless offset most of the positive effects of treatment. But for many very poor patients, being homeless keeps them from getting consistent drug treatment at all.”
This study, which reflects what many AIDS activists have been saying for years, contradicts the recent NYC HASA policies. HASA’s new policy calls for people who fail a drug use assessment to go through drug treatment or be denied access to permanent housing benefits through HASA. Because you have to have an AIDS diagnosis to get HASA assistance, people who may be already facing the most serious health challenges can be denied housing if they are not ready or able to go through treatment.
More and more, NGOs, governments, local health departments and some activists are advocating for people to start HIV treatments as soon as they are diagnosed. Housing Works believes people should begin treatment when they are ready and able. It also seems that as long as AIDS remains mostly a disease of the poor in the US, any strategy to ending the epidemic has to prioritize housing.
The study concludes that “Impoverished persons will not fully benefit from progress in HIV medicine until these barriers are overcome, a situation that is likely to continue fueling the US HIV epidemic.”
It is now well recognised that effective antiretroviral therapy has significantly improved the life expectancy of many patients with HIV
A large international study has provided persuasive evidence of the long-term safety of antiretroviral therapy. Writing in the online edition of AIDS, investigators from the EuroSIDA study report that prolonged use of antiretroviral therapy did not increase the risk of death from non-AIDS-related illnesses.
“The main finding of our study was that there was no evidence of an increase in the risk of any non-AIDS-related death with prolonged exposure to cART [combination antiretroviral therapy],” comment the authors. “The results are reassuring that so far prolonged use of cART does not appear to be leading to increased risk of death due to some previously identified cumulative effect, or a drug effect whereby there is a long induction period before disease appears.”
It is now well recognised that effective antiretroviral therapy has significantly improved the life expectancy of many patients with HIV.
However, all anti-HIV drugs can cause side-effects, and treatment with some has been linked to an increased risk of cardiovascular disease or kidney dysfunction. Whether prolonged treatment with antiretroviral therapy carries an increased risk of death from these and other diseases is currently unclear.
Therefore investigators from the EuroSIDA cohort study looked at the outcomes of approximately 12,000 patients who received potent combination antiretroviral therapy after 1996.
These patients were categorised according to the duration of treatment (under two years; two to three years; four to six years; six to eight years; and over eight years).
Overall mortality incidence was then calculated according to treatment exposure, as was the incidence of AIDS-related and non-AIDS-related deaths. The investigators adjusted their results to take into consideration factors known to independently affect prognosis including demographics, HIV risk group, co-infection status, CD4 cell count and viral load, and previous history of AIDS-related illnesses.
During 70,000 person years of follow-up, a total of 1297 patients died. A little over two-thirds of deaths (68%) were attributed to non-AIDS-related causes.
AIDS-related mortality accounted for 32% of all deaths. The investigators attributed 9% of deaths to non-AIDS-related infections, 14% to liver-related causes, 10% to non-AIDS-related cancers, 9% to cardiovascular causes, 7% to violence (including suicide) and 7% to other causes. In addition, 12% of non-AIDS-related mortality had an unknown cause.
Incidence of all-cause mortality was 18.3 per 1000 person years; AIDS-related mortality had an incidence of 5.85 deaths per 1000 person years; and the incidence of non-AIDS-related mortality was 12.5 per 1000 person years.
Further analysis showed that the incidence of all-cause mortality and AIDS-related mortality fell significantly as exposure to HIV therapy increased. However, the incidence of non-AIDS-related deaths remained broadly stable.
Each additional year of HIV therapy (after year two) was associated with a 5% reduction in the risk of all-cause mortality (p < 0.0001) and a 14% fall in the risk of AIDS-related deaths (p < 0.0001). The risk of non-AIDS-related deaths fell by 3% each year, a reduction that fell just short of significance (p = 0.06).
“Our analyses confirm the prolonged benefit of cART, with a 5% reduction in the overall risk of death per additional year on treatment, which was mostly attributed to a decrease in the risk of AIDS-related deaths.”
Prolonged use of antiretroviral therapy was also accompanied by a reduction in “the risk of liver-related death, violent, and unknown death.” The investigators speculate that the lower risk of violent death “could relate to stabilised health conditions, life-style changes or improvements in socio-economic status.”
However, longer duration of HIV therapy was accompanied by an increase in mortality attributed to non-AIDS-related cancers. The authors suggest this “may reflect aging of the HIV population…or improvement in cancer screening.”
They conclude: “It is clear that death due to accumulating treatment toxicities is a very uncommon event.”
Good nutrition is especially important for people living with HIV,
Good nutrition helps keep your immune system strong and it’s especially important for people living with HIV, as it enables them to better fight the condition.
Loss of weight and loss of energy are common problems for HIV-positive people. But a healthy diet and exercise can help improve their quality of life.
“It is more important for people living with HIV because HIV has a negative effect on nutrition. If the immune system is not functioning well, that gives HIV even more opportunities to multiply and cause illness in the body. So, an HIV-positive person must take nutrition as a serious matter in their lives”, says Dr. Limakatso Lebina, of central Johannesburg’s Zuzimpilo Clinic.
She says a balanced healthy meal does not have to be costly.
“The old African food is usually the best. Your pap and vegetables are good nutritious food. A balanced diet consists of your carbohydrates, a big focus on vegetables and proteins… proteins does not necessarily mean meat. Your beans, peanuts, cheese, milk… that’s good nutritious meals. That’s not that costly”, says Dr. Lebina.
She saysexercising is also important for HIV-positive people because they often lose weight, especially their muscle mass. On the other hand, she points out that obesity is also on the rise among HIV-positive people.
“Obesity is also a problem among HIV-positive people, as it is an increasing problem in South Africa. It does not necessarily mean if you are obese you’re healthy and you have normal nutrition. Exercise is important to keep the body mass low and increase muscle weight. Exercise does not have to happen in the gym. Working in the vegetable garden is exercising, walking the child to school, and just running up and down your house 30 minutes is exercising - as long as it is done regularly”, says Dr. Lebina.
Dr Lebina warned against a trend where HIV-positive people have deliberate intentions to gain weight.
“Unfortunately, the stigma that came with HIV is something that we’re still working on.
It has always been thought that those that are thin are the ones that are HIV-positive and those that are fat and heavy-weight are the ones that are well. However, we all know that you cannot diagnose HIV by looking at the person”, says Dr. Lebina.
Frieda Nxisana, a nursing manager at Cotlands, a safe home for HIV-positive and abandoned children, warned against eating fatty foods. She says foods that are high in fat prevent antiretroviral medication from working.
“When you give a child a diet that is high in fat, that fat will prevent the ARVs from being absorbed in the stomach”, says Nxisana.
She also warned againstconvenience foods, saying that they may contribute to the HIV disease progression.
“In our community we have kotas. A kota is bread that they put chips and achaar in. All these things have fat and fat prevents the absorption of ARVs. But if you can take that bread and put beans inside and serve it like that, a person gets a nutritious meal instead. A snack of a fruit is much better than a snack of chips. And also drinking water is the best, especially for children… plain water is the best”, says Nxisana.
Nxisana advised families with HIV-positive people to buy nutritious meals that can be enjoyed by everyone in the family, including children.
“Whatever diet you put together, it’s easy when it’s a diet that can be eaten by an adult as well as a child. For example, Nespray milk… an adult can take Nespray in her tea, and a child will take Nespray as a drink”, says Nxisana.
The life expectancy of patients receiving antiretroviral therapy in the UK improved significantly between 1996 and 2008
The life expectancy of patients receiving antiretroviral therapy in the UK improved significantly between 1996 and 2008, research published in the British Medical Journal shows. Patients who initiated HIV therapy when their CD4 cell count was in the region of 350 cells/mm3 had an average life expectancy of approximately 75 years.
However, starting HIV therapy with a CD4 cell count below 200 cells/mm3 was associated with a poorer prognosis, highlighting the importance of improved HIV testing and the prompt initiation of therapy.
“Life expectancy is strongly related to the CD4 count at which individuals start treatment,” write the investigators from the UK Collaborative HIV Cohort (UK CHIC). “This highlights the need to identify people infected with HIV early in the course of their infection, before substantial CD4 loss has occurred.”
Results also showed that, overall, the average life-expectancy of patients with HIV was about 13 years lower than that for the general UK population. However, all the average life expectancy figures reported by the researchers necessarily include patients who started treatment late. This group of patients are known to have a worse prognosis.
HIV is now considered a chronic, manageable condition, and with the right treatment and care the prognosis of many patients is excellent. Although several studies have examined mortality rates in the era of effective HIV therapy, few have examined how long patients with HIV can now expect to live.
“Estimates of life expectancy are important to individuals who want to plan their lives better, to service providers, and to policy makers,” explain the investigators. They therefore used data collected between 1996 and 2008 to estimate the life expectancy of patients who started HIV therapy when their CD4 cell count was below 350 cells/mm3, the current threshold for starting antiretroviral treatment in the UK.
The life expectancy of patients with HIV was compared with the life expectancy of the general UK population, and the investigators also calculated the impact of late initiation of HIV therapy on prognosis.
A total of 17,661 individuals aged 20 and above were included in the study. Most of the patients were men (75%), white (58%), and their median age was 37 years. Overall, 42% of patients started HIV treatment late – defined as a CD4 cell count below 200 cells/mm3.
Patients were followed for a median of 5 years, and during 91,203 person years of follow-up a total of 1248 (7%) of individuals died. The overall mortality rate was 13.7 per 1000 person years. However, this fell from 28.8 per 1000 person years in 1996-99 to 9.5 per 1000 years between 2006-08. Improvements in HIV treatment in care over the period largely account for this fall in the mortality rate.
The investigators calculated that a 20-year-old receiving HIV therapy in 1996-99 would live on average a further 30 years. This life expectancy increased to 46 years in the period 2006-08.
Life expectancy for a 35-year-old was an additional 20 years of life in 1996-99, and 31 years in the period 2006-08.
However, prognosis differed by gender, and was significantly better for women than men. Overall, life expectancy for a 20-year-old woman was an additional 50 years compared to 40 years for men.
HIV-positive patients had a significantly shorter life expectancy than individuals in the general population. A HIV-negative 20-year-old woman would be expected to survive until she was 82 years old and an HIV-negative man until he was 78.
“Compared with the same sex in the general UK population, for patients undergoing treatment for HIV infection, life expectancy at age 20 was 18.3 years less for men and 11.4 years less for women,” write the investigators.
They note “the prevalence of smoking, drug misuse, and alcoholism are all higher among people with HIV, which leads to increased deaths from cardiovascular disease, cancer, liver disease, suicide, overdose and injury.”
But further analysis showed that starting HIV treatment promptly significantly improved prognosis – which approached normal levels for patients who initiated therapy at a level indicated by current guidelines.
Patients who started therapy with a CD4 cell count between 200 and 350 cells/mm3 had an average life expectancy of 75 years, but this fell to 61 years for individuals who initiated therapy when their CD4 cell count was between 199 and 100 cells/mm3 and to 58 years for those who started treatment with a CD4 cell count below 100 cells/mm3.
“Patients should start antiretroviral therapy once their CD4 cell count has fallen below 350 cells/mm3,” emphasise the investigators.
“Life expectancy among people with HIV has considerably improved in the UK between 1996 and 2008, and we should expect further improvements for patients starting antiretroviral therapy now with improved drugs and new guidelines recommending earlier treatment,” conclude the authors. “The clear impact of low CD4 cell count on life expectancy implies that it is particularly important to diagnose HIV infection at an early stage.”
This CAI paper reflects on the criticality of HIV status disclosure.
With an estimated 33.3 million people worldwide living with HIV, it is clear that treatment, care and prevention with regard to HIV & AIDS are imperative.(2) Endeavours to control and prevent further spread of the virus rely on the development and implementation of successful strategies to prevent infections and to ensure the treatment of currently infected individuals.(3) HIV serodisclosure has been identified as a critical aspect of HIV prevention, as well as treatment, care and support for those already-infected individuals.(4) As the pandemic continues to extend its reach, HIV positive individuals are often made to face serious decisions regarding serodisclosure throughout a number of areas of their lives.(5)
This CAI paper reflects on the criticality of HIV status disclosure. The character and process of disclosure are highlighted, as well as the nature of post-serodisclosure experiences and the manner in which these experiences can affect those who disclose and those contemplating doing so. The implications of failure to disclose are also noted.
Towards an understanding of the nature and process of serodisclosure
The relationship between those affected by and those infected with HIV is an important factor to consider when investigating serostatus disclosure. Implicit to this relationship is the fact that HIV is defined by its communicable nature - it has been called a “disease of society and human relationships”.(6) An awareness of the vectors for HIV transmission must therefore highlight the importance of communication and the disclosure ideally associated therewith. The value of these factors cannot be underestimated and therefore, the ability to safely and accurately communicate one’s serostatus to the appropriate parties must be carefully and critically appreciated. Research has described the disclosure of serostatus as a core component of access to treatment and management programmes, for generating behaviour changes and, in some instances, for decreasing levels of community stigma.(7,8)
Serodisclosure has been described as one of the most complex experiences for a person who has been diagnosed with HIV. Receiving a seropositive test result can be a life-changing experience and cause a paradigm-shift for which many are unprepared. In responding to this event, personal acceptance and personal disclosure skills must be considered.(9) Handled properly, this process is regarded as central to coping with the diagnosis and preventing further infection, as well as understanding and mitigating the effects of infection.(10) Disclosing one’s status can often be a critical point in accessing treatment, care and support programmes and structures.
Chaudoir and Fisher have pointed out that disclosure has the potential to affect behavioural, psychological and health outcomes, including illness progression.(11) However, it remains a complex decision with a number of implications. Benefits to disclosure certainly exist, but there are considerable barriers to serodisclosure which must be considered as well. However, before these are discussed it is important to understand the initial setting for guiding disclosure choices.
Laying the groundwork: Encouraging disclosure in the HCT setting
Within the context of HIV counselling and testing (HCT), a distinct emphasis is placed on encouraging and supporting seropositive clients in disclosing their status, especially to their sexual partners - both current and previous.(12) The Joint United Nations Programme on HIV & AIDS (UNAIDS) and the World Health Organisation (WHO) have consistently promoted education around disclosure as a core component of post-HIV-test counselling sessions; they recommend that disclosure should be guided by ethical imperatives in order to maximise the potential outcomes for those infected as well as those affected.(13) The recently released Global Health Sector Strategy on HIV/AIDS 2011-2015 hassuggested scaling up support for rights-based testing and counselling services in an effort to ensure prevention and early diagnosis, and appropriate referrals so as to create culture of safe disclosure of HIV status.(14)
To encourage disclosure, one must therefore proceed with sensitivity. However, the process of serodisclosure has been described as a possible double-edged sword for many individuals,(15) with benefits, barriers and complications characterising the process.
Benefits of disclosure
There are a number of public and personal health benefits of serodisclosure. Upon finding out the infected person’s serostatus, sexual partners of the infected person may elect to undergo HCT, and change their behaviours, which may prevent further infections.(16,17) Disclosure also has the potential to encourage other health behaviours such as participation in programmes to prevent mother-to-child transmission, and improved access to treatment services and support networks.(18)
Despite the risk of adverse reactions, research has shown that in the majority of cases, seropositive people will disclose their status to at least one person.(19) A South African study found that 92% of participants had disclosed their serostatus to one person.(20) Similarly, in an Ethiopian study, approximately 94.5% of participants had disclosed their status to at least one person - although this was not always a sexual partner.(21)
A number of studies have shown positive outcomes towards serostatus disclosure. These include reports of increased levels of social support, acceptance and kindness experienced by those who disclose.(22) Additionally, depressive and anxiety-related symptoms were reported to decrease upon disclosure with positive outcomes.(23,24) An interesting proviso is made in some cases where it has been suggested that the benefits of disclosure for the seropositive person should be weighed against the potential outcomes in deciding to disclose.(25) This should guide understandings of all disclosure decisions.
Barriers to serodisclosure and negative serodisclosure experiences
Studies among women in sub-Saharan Africa have revealed that disclosure may be prevented or hampered by a fear of a partner’s negative reaction including rejection, accusations of infidelity, loss of economic support, abandonment, and acts of violence.(26,27,28) In a number of instances, this has indeed been the case.
Evidence has revealed barriers to testing and disclosure at the intersection of two epidemics - HIV and violence. In 1998, a South African woman was beaten to death as a result of having publicly disclosed her HIV serostatus.(29) In 2008 in Uganda, a man hacked his wife to death with a machete upon learning he had become infected with HIV.(30) Ten years separate these events, and yet despite the considerable advances that have been made in shifting negative attitudes and discriminatory practices towards those diagnosed and living with HIV, such violent acts were perpetrated on the basis of the victim’s serostatus alone. Research has suggested that post-test counselling support services should pay particular attention to those individuals living with abusive partners.(31)
In a study investigating the reactions of women receiving a seropositive test result, 38% of the sample responded with negative reactions including rejection, silence, denial, blame and physical violence. In the same study, two participants reported a significant fear of being physically abused should they disclose their seropositive statuses.(32) Similarly, a Tanzanian study found serodisclosure to lead to certain negative outcomes, including refusal of partners to be tested, family separations and abandonments, as well as suicide attempts.(33)
The decision to disclose is complicated and must be made in the context of risk reduction strategies. However, this decision is coupled with a significant risk of exposure to discrimination and stigma. HIV & AIDS stigma and discrimination have been identified as compromising the health and wellbeing of those living with the infection.(34) Research has indicated that a fear of stigma, discrimination and rejection lies behind numerous cases of non-disclosure to partners, families and employers. In some instances this may lead to a shameful existence which can influence attitudes towards the disease as well as treatment commitments.(35) However, with high disclosure rates it must be noted that among the positive benefits of disclosure is the fact that it may help to decrease stigma and discrimination in communities.(36)
Additional factors influencing disclosure
There are a number of factors which can influence the manner of disclosure. Studies have shown that relationship-type may influence disclosure patterns, and it seems that disclosure is largely guided by concern for the health and well-being of partners.(37)
When assessing the impact of gender on disclosure rates, the abovementioned Ethiopian study noted that disclosure across genders followed from shared communication highlighted in relationships. Interestingly, while disclosure rates were similar across genders, reasons for non-disclosure did vary by gender. Where women feared violent retribution and socio-economic consequences for disclosure, men were characterised by a fear for their partners and of the exposure of infidelity.(38) In this study, men were encouraged to disclose by prior discussion as well as knowing their partner’s status, while for women, additional factors such as disease stage, level of education, marital status and the nature of the relationship guided disclosure decisions.(39)
Failure to disclose
In one South African study, 21% of respondents did not disclose their serostatus to their partners.(40) This means that approximately one in five participants did not elect to share their HIV status with their partners. The implications and consequences of such a failure to disclose are significant. Each person who does not know or disclose their status to a sexual partner creates the risk of an exponential number of new HIV infections as a result of this covert transmission.
Additionally, those who do not disclose their serostatus may be denied access to the support structures which enable an adaptive coping response to diagnosis. These could include family and community support systems. It must be noted, however, that many seropositive persons identify at least one person in their social networks to whom they do not plan to disclose. This has been attributed to a fear of rejection, stigma and a fear of isolation.(41)
Conclusion and recommendations
Serostatus disclosure is widely regarded as a central component of post-diagnosis adjustment and coping. Individuals may choose to diagnose their statuses either privately or publically, but ultimately the process of sharing the truth with another has been shown to be beneficial on a number of levels.
This paper has sought to touch on both positive and negative factors that may influence serodisclosure. As highlighted, anticipated post-disclosure events may, in some instances, act as deterrents from disclosing one’s status. However, anticipation of positive post-disclosure events may encourage individuals to share their statuses. Acknowledging and fostering such conditions may serve to create an environment that encourages disclosure.
No need to be alarmed by a study that received wide media coverage this week; benefits far outweigh the risks.
People with HIV on antiretroviral treatment or at the point where antiretroviral treatment is recommended need not be alarmed by a study that received wide media coverage this week. Antiretrovirals save lives. Their benefits far outweigh their risks.
On Sunday 26 June scientists from Newcastle University in the UK issued a press statement explaining that they had found evidence that a class of antiretroviral (ARVs) called nucleoside reverse transcriptase inhibitors (NRTIs) could theoretically contribute to accelerated aging in people with HIV. Their paper was published in the prestigious scientific journal, Nature Genetics. The press statement was picked up by the SABC and was the top item on radio news on Sunday evening. It has subsequently received wide media coverage in South Africa and elsewhere.
We are concerned that this report has caused unnecessary anxiety in people with HIV who are taking ARVs or will soon be starting ARV treatment. NRTIs are a crucial part of ARV treatment regimens across the world, in both rich and poor countries.
The term accelerated aging refers to evidence that people with HIV may have higher rates of non-AIDS illnesses, such as heart disease, dementia, bone fractures and certain cancers than HIV-negative people of the same age.
The study examined 33 people with HIV under 50 and compared them to 10 HIV-negative people who were slightly younger on average. It found that people on NRTIs had a higher frequency of genetic mutations in their mitochondrial DNA of a type known to accumulate during normal aging in HIV negative people.1 The study does not show that NRTIs caused these mutations, but rather that in some study participants, use of the drugs was associated with an increase in their frequency above what would be expected among HIV negative people of similar age.
It is suspected by some scientists that the increased frequency of mutations in mitochondrial DNA that occurs as people get older plays a causative role in aging, but others believe they are a consequence of aging. As the Nature Genetics paper states: “it is still not clear whether the DNA mutations are a cause or a consequence of aging in humans.”
The study was very small and did not compare health outcomes between the study volunteers. A study like this cannot exclude the possibility that factors unrelated to HIV or ARVs were responsible for its findings.
People with HIV and their carers should be aware of the following:
- The association between NRTIs and mitochondrial DNA mutations found in this study have been known since at least 1998.2 This study provides a small piece of evidence in an ongoing complex scientific discussion;
- HIV itself causes damage to mitochondrial DNA.3;
- Nothing in this study contradicts the fact that the benefits of ARVs far outweigh their risks;
- If you live with HIV and your CD4 count is below 350 cells/mm3, delaying ARV treatment will almost invariably leads to an array of illnesses and ultimately death. However, by starting ARV treatment you are very likely to restore your health so that you are able to lead a full life with almost normal life-expectancy;
- Studies show that people who have had a CD4 count below 200 cells/mm3 are more likely to have signs of accelerated aging than people who have started treatment before reaching this point;
- The optimal CD4 count at which to start ARV treatment is not yet known, but there is clear evidence from clinical trials and observational studies that it is at least 350 cells/mm3. There is emerging evidence from observational data that starting ARV treatment with a CD4 count greater than 500 cells/mm3 is beneficial, but this is unclear and will have to be determined by clinical trials. Two clinical trials, START and TEMPRANO, are looking at this and will report results in the next two to four years;
- There is clear evidence from the HPTN 052 trial that if you are on ARV treatment at any CD4 count below 550 cells/mm3, you will be less likely to infect your sexual partners;
- ARVs, like all effective chronic medicines, have short and long-term side-effects. Accelerated aging is a concern for people with HIV and is a research priority. However, the extent to which HIV infection or ARV treatment is a cause of accelerated aging is an unresolved scientific question. If you are on ARV treatment it does not mean you are likely to age prematurely. If you are showing signs of accelerated aging, there are often medical interventions that can improve your quality of life;
- To the extent that ARVs may be associated with accelerated aging, the Nature Genetics study indicates that this would be more likely to happen in people with complicated treatment histories. This is often associated with starting ART at a very late stage of HIV infection or having to switch regimens frequently because of side effects;
- There are no implications for ARV guidelines for any country that follow from the Nature Genetics study.
In a statement below, we consider the Nature Genetics study in more detail.
Mitochondrial aging and NRTIs: a technical note
The study by Payne et al. examined 21 patients with a history of ART, 11 patients with HIV but who were still ART-naive and ten age-matched HIV-negative controls.6 Skeletal muscle was extracted from each of the subjects and examined for genetic mutations.
The study found that in the subjects with a history of ART, particularly NRTI use, there was a statistically significantly greater amount of mutated mitochondrial DNA than in the HIV-negative controls or ART-naive HIV-positive subjects. There was no difference between the latter two groups.
Eleven of the 21 patients on NRTI-containing ART had no signs of excess mutations over what would be expected among HIV-negative individuals of similar age (0.5 percent or less), including six subjects who had been on treatment for over five years (in one case, 10.5 years). Several more had very minor proportion of mutations. The “up to 10percent” figure cited in the study abstract is derived from one 45-year old individual with an extensive treatment history and more than 13 years since diagnosis who showed evidence of mutations in 9.8 percent of muscle cells. The authors noted health problems in four of the people on ART.
Most of the contribution to the statistically significant result came from three patients with long and complicated treatment histories, i.e. many ARV switches over many years.
The study was not set up in a way to examine the link between these mutations and clinical signs of aging so the relevance of these findings to clinical aging is unclear.
The finding that NRTIs are responsible for mitochondrial mutations is not new. In a 1998 paper in the journal AIDS, titled Adverse effects of reverse transcriptase inhibitors: mitochondrial toxicity as common pathway, the authors state:
More than 10 years of experience with NRTI therapy has revealed important adverse effects ranging from mild (myopathy) to fatal in some cases (pancreatitis, liver failure and lactic acidosis). Behind most of these side-effects there appears to be a common mechanism: a decreased mitochondrial energy-generating capacity … didanosine (ddI), zalcitabine (ddC), lamivudine (3TC), stavudine (D4T), and recently abacavir..........A special feature of some of these drugs is the protection against AIDS dementia complex, which appears to be related to good penetration of the blood-brain barrier. … Altogether, mtDNA appears to be extremely vulnerable to genetically and exogeneously acquired mutations. Since DNA polymerase γ appears to be the only regulating enzyme of mtDNA replication, inhibition of this enzyme with RTI might easily downregulate this replication resulting in decreased mitochondrial energy generation.
However, HIV itself causes damage to the mitochondria. This is from Changes in Mitochondrial DNA as a Marker of Nucleoside Toxicity in HIV-Infected Patients published in the New England Journal of Medicine in 2002:
Mitochondrial DNA:nDNA ratios were significantly lower in HIV-infected, asymptomatic patients who had never received antiretroviral therapy than in non–HIV-infected controls (P<0.001), a difference that was not explained by the lower CD4 counts in the former group. This finding is consistent with the results of recent in vitro studies in which HIV-infected cells had signs of mitochondrial necrosis. Furthermore, a mitochondria-controlled mechanism of cell death has been postulated in HIV infection.
The importance of mitochondrial DNA mutations in aging is also controversial. Many scientists believe that aging is normally due to damage to the cell's DNA, particularly telomeres. Telomeres are repetitive sequences of DNA at the end of the chromosomes. They signal to the cell reproduction process that copying should stop, else the chromosome will be merged with neighbouring chromosomes. Each time a cell replicates, the telomeres are shortened, eventually leading to them being so short that the cell cannot reproduce properly. There is evidence that both HIV and NRTIs shorten telomeres in some cells.
In conclusion, while the effects of NRTIs on mitochondrial DNA are concerning, we still know very little about the clinical consequences of this or how pervasive or serious a problem it is.
Thank you to Richard Jefferys, Simon Collins, Gregg Gonsalves, Nick Bennett and Ken Witwer for assistance with this article. TAC takes full responsibility for its contents.
Mitochondria are the energy factories of cells. Their DNA is quite interesting in that it is separate from the DNA of the cell that generates each unique human being. In other words mitochondria reproduce using their own DNA, not the DNA that reproduces our cells. This is because over a billion years ago they were a separate organism that evolved to form a mutually beneficial relationship with the cells found in all complex animals and plants. We inherit our mitochondria from our mothers.
The anxiety I am now experiencing stems from some of the unavoidable stark realities of ageing with HIV
I have written about many aspects of HIV but so far, I’ve managed to avoid the subject of ageing. I am usually a very forward looking and optimistic person but, having recently hit the ripe old age of 50, my happiness at being alive and leading a fairly normal life is tinged, not just with guilt, but also growing anxiety about the future.
My guilt stems from the many reflective articles and speeches that have been triggered by the 30-year anniversary since HIV was first identified in California back in 1981. The most sobering fact about the commemorations is the staggering number of people we have already lost to this one disease so far – between 25 to 30 million worldwide, with just under 34 million currently living with HIV. Around 10 million people should be receiving HIV treatment but instead they’re languishing on waiting lists across the globe as a result of the myriad of differing interpretations of access. The deteriorating health of the global finances is also playing a huge role in this.
The anxiety I am now experiencing stems from some of the unavoidable stark realities of ageing with HIV. Some of the statistics emerging indicate that by 2015 half of all people living with HIV will be over 50 – on the one hand this is amazing because we were never supposed to live so long, but on the other it’s hugely challenging because of what that means for our future health and whether our health facilities are ready for what is already unfolding. Just the other day I read a feature referring to anyone over 50 who is living with HIV as elderly and I immediately thought ‘give me a break’, but they may have a point. There is a phenomenon in HIV circles referred to as ‘accelerated ageing’ which scientists are still not sure is induced by certain HIV drugs, the premature ageing of immune cells, or both.
Such HIV drugs were the very first on the market and became available in the early 1980s. Many of these are no longer being used in developed countries but are still a real lifeline in developing countries across the world. In many clinics in places like Sub Saharan Africa, where HIV is still a big challenge and there are very few drug options, doctors report seeing patients who are doing very well on HIV treatments but look twice or three times their real age. Even though people might be feeling well and living longer, visible physical changes that are not exactly flattering, can have a much more negative emotional impact and can be doubly stigmatizing.
Over thirty years ago, researchers predicated that people living with HIV would be more prone to heart conditions, neurological disorders, and cancers that affect the elderly. And sure enough, whether it is HIV itself or the treatments, doctors are seeing an increased risk of illness and death from liver, lung, kidney, bone and cardiovascular disease as well as many cancers not traditionally HIV-related. Many of these ailments – and some others which are currently being researched – are showing up in people living with HIV in their 30s, 40s & 50s; ailments that are usually seen in people who are 70-years of age and above in the general population.
Lighten up, I hear you telling me, reminding me that the only certainties in life are getting older, taxes and death! I agree to a point. However, I also believe that there is no harm in confronting life’s challenges as long as you are able to offer solutions, raise awareness and educate others in the process – all points I hope I am able to address through this forum.
Much more needs to be done where the elderly living with HIV are concerned. There is the unspoken view that people over fifty either should not be having unprotected sex or are not having sex at all. Since unprotected sex is one of the main modes of HIV transmission, it’s ridiculous that there are hardly any prevention messages targeted towards older people. Indeed, when people over 50 end up testing HIV positive it’s often a surprise to some health professionals, not to mention being quite traumatic and shameful for their patients. Organisations such as HelpAge International have seen the number of over 50s who are testing positive increasing over the last few years but there is still nowhere near enough support for this group.
I am also acutely aware that as a 50-year-old living with HIV, I am at risk of becoming invisible if research and monitoring organisations do not review their guidelines beyond the current cut off age of 49. HIV prevalence figures in many countries only take into account adults between 15 – 49 years of age; a figure which does not even consider older people living with HIV or their potential treatment and care needs.
In short, much more needs to be done for the over 50s living with HIV – not to just to highlight this uneasy interface but to invest financially, to carry out more research and analyse the impact of the disease medically, socially, and otherwise for this important but essentially sidelined population.
Access to antiretroviral treatment, promoting a rights-based culture, fighting stigma and viewing HIV/AIDS as a chronic and manageable disease, will go a long way in helping South Africa in its fight against the epidemic
Given the extremely high prevalence and incidence of HIV and AIDS in South Africa, coupled with relatively wide ranging access to antiretroviral therapy (ART), many point to a HIV positive diagnosis transitioning from a ‘death sentence’ to a ‘manageable illness’ similar to other chronic conditions such as diabetes and high blood pressure. While the manageability and chronicity of HIV is arguably nothing new in well-resourced settings, the idea of HIV as a manageable condition is a new concept for many South Africans. However, given drastic mortality rates, high levels of social stigma and continued struggles with accessibility of ART in some areas, the question arises as to whether this is really the case? Also, if an ease of acceptance of HIV positive diagnosis is occurring, what are the implications?
This CAI paper explores the impact that high levels of HIV and AIDS and relatively wide-ranging ART in South Africa have among people living with the virus.
The changing characterisation of HIV and AIDS in South Africa
The perception of HIV and AIDS has changed significantly since it became a well known disease in SA in the early 90s. The past three decades have seen the country's HIV prevalence rate grow to over 15 percent with approximately 5.6 million HIV-infections.(2) Through national debates, mass prevention efforts, international involvement and community mobilisation for universal treatment, HIV has become increasingly ‘normalised’ in many ways, in terms of social acceptance, acknowledgement and visibility.(3) Even so, stigma plays a significant role in the characterisation of the virus in South Africa today.
While some argue that HIV status disclosure is no longer rare, the stigma associated with disclosure is identified as a major driver of the HIV and AIDS epidemic. The role it plays in undermining treatment and prevention efforts is widespread in South Africa.(4) Stigma is a multi-faceted phenomenon, which is a culmination of a set of societal factors that prevent, harm and delay disclosure of one’s HIV status. Stigma surrounding the virus is universal but South Africa’s HIV and AIDS stigma is unique to its social conditions and historic legacy of fragmentation, blame and oppression.
However, new light is being shed on the relationship between disclosure and stigma. A recent working paper released by the Centre for Social Science Research points to high levels of disclosure within individual households contrasted with low levels of disclosure in the general population. The study indicates that in a township outside of Cape Town with high HIV prevalence, “disclosure was not only met with positive and supportive responses from household members, but that it…shifted over time as individuals became more aware of the prevalence of HIV, and started to dissociate the virus from conceptions of promiscuity and death.”(5)
The authors problematise disclosure and describe it as a complex process, but their findings demonstrate that while stigma is still a significant barrier to living positively with the virus, the barriers are slowly eroding especially at the household level. Both the changing nature and high prevalence of the disease has had an impact on this changing norm.
Shifting norms in light of access to ART
Perhaps the most prominent influence in shifting the norms around HIV in SA is its ART programme and what this means for living with the virus. With the largest rollout of ART in the world, SA has relatively wide ranging access to treatment.(6) However, with more than five million people infected and just 700 000 receiving ART, there are still significant gaps in treatment.(7)
In a recent report, Christopher Colvin of the Centre for Infectious Diseases and Epidemiological Research at the University of Cape Town points out that although a major treatment gap exists, it is closing significantly and this means HIV is moving from an acute disease to a manageable, long-term condition.(8) According to Colvin, “Many of the dramatic developments in the earlier history of the HIV epidemic were driven by a focus on HIV’s ‘acuity’ rather than its chronicity…especially in Southern Africa.”(9) This change denotes a major shift, not only for the national health-system and funding needs, but also on shifting norms on a personal level of what it means to live with the virus.
As a result of recent community and political mobilisation for the right to treatment, high levels of foreign investment and interest in HIV and AIDS programming from the medical and social sciences, more and more HIV positive South Africans are experiencing longer lives. In post-apartheid SA, the struggle for access to treatment has been defined by a highly publicised divergence between the government and AIDS activists associated with the well-known Treatment Action Campaign (TAC) over a history of AIDS denialism and insufficient access to ART.(10) The history of access to ART is fraught with conflicts, court challenges and at times militant social movements to demand treatment. This has created a rights-based discourse around access to treatment specifically and access to health care more generally.
While there are serious concerns that the health system and international donor community cannot keep up with the demand that universal ART coverage demands, the ethos around HIV and one’s right to life through ART continues to be firmly cemented through TAC and other civil society activities. For example, the 'I am HIV positive' campaign that links HIV positive and negative people together in a solidarity building effort has had a tremendous impact on normalising the virus. This rights-based culture continues to play a major role in shifting the norms of living with HIV by promoting social acceptance and awareness. These campaigns and others are indicative of the pursuit to change the nature of the epidemic from an acute to chronic, manageable illness.
Positive Heroes: A case study in normalisation
Little research has been conducted on what impact the chronicity of HIV in SA is having at an individual level. In this emerging research area, experts suggest that as a result of scaled up ART, the illness is not just lasting longer but is also increasingly ominous and complex, with alternating periods of crisis and stability.(11) Studies have not yet been conducted on whether there is an increased morale among HIV positive people as a result of awareness and access to treatment. However, the assumption that this may well be the case may ring true in a country where mass education and prevention campaigns are well-known and government and NGO efforts to address stigma, increase adherence and provide a safe environment to discuss HIV are ubiquitous.
The South African NGO Positive Heroes is one example where efforts to confront stigma aim to “…raise the profile of South Africans who are living positively with HIV, from a wide variety of communities and walks of life both urban and rural, in order to encourage people to manage their HIV and live full, rewarding lives.”(12) The approach taken on by Positive Heroes embodies the shift towards normalisation by promoting that the virus does not have to define one’s life. One ‘positive hero’ describes his experience of managing the virus in relation to other chronic diseases.
He says that it is “such a breeze for me to disclose now because I know that HIV is manageable and that there is life after HIV” while another role model exclaims that “being HIV positive is not a death sentence and there is so much that can still happen in your life.”(13)This type of initiative highlights not only the social will for a major shift in thinking of the virus but a social mobilisation beyond the well-known Treatment Action Campaign in promoting normalisation.
Implications and concerns
While wide ranging access to ART and the normalisation of HIV in SA is something to be celebrated, there are implications and concerns. Colvin points out that ART enables people on treatment to be involved in the labour force and to participate in and enjoy normal, everyday activities that were likely impossible without treatment. However, he also suggests that ART comes with unique challenges, such as difficulties with adherence, episodes of serious illness and at a national level, the need for continued investment of public and international resources to sustain treatment programmes.(14)
High HIV prevalence and treatment rates pose challenges to the labour market, which is already struggling with a very high unemployment rate. As a result of HIV affecting many individuals in their most productive years, the chronicity of the virus has been shown to both positively and negatively affect household employment outcomes, consumption, savings, behaviour, educational attainment and investment in children depending on the stage of one’s health.(15)
The stress on SA’s health system in rolling out long-term ART is perhaps the most well publicised challenge attributed to the chronicity, high prevalence and incidence of HIV in SA. In addition to the massive international challenge of ART funding ‘flat-lining,’ SA also lacks the human resources to deliver HIV and AIDS treatment at the rate necessary to reach universal goals. In order to reach universal treatment goals, SA requires more than three times their current healthcare workforce to be added every year for the next six years to reach universal coverage by 2017.(16)
Viewing HIV as a chronic, manageable infection is not a new concept and has dominated HIV treatment discourse for quite some time in well-resourced settings. SA is in a unique situation in which its HIV positive citizens are accessing life-prolonging treatment on a public scale that is unmatched in the rest of the world, largely thanks to the strong tradition of social justice movements in the country. However, as HIV becomes more normalised and the hope for a long, ‘normal’ life increases, it is important to balance optimism with pragmatism for the future of those living with HIV in SA.
Programmes such as ‘Positive Heroes’ and the ongoing work of the TAC and others are steadily ensuring increased accessibility and reduced levels of stigma to promote HIV as a chronic, manageable illness. However, there is a need to make this a reality for everyone. In 2009, the Joint United Nations Programme on HIV/AIDS (UNAIDS) estimated that approximately 310 000 people died of HIV, averaging to 850 deaths per day.(17) This alarming mortality rate indicates that ‘chronicity’ is not a reality for everyone. Many HIV and AIDS patients still lack access as a result of lack of testing, non-disclosure or health system constraints and, without a concerted effort to address these problems and make manageability a reality for all, patients like these may never experience the shift from an acute disease to a chronic, manageable illness.
For those living with HIV/AIDS, using your bodies to minimize stress is essential.
I probably don't need to tell you that our lives are full of tons of stress. Money, relationships, terror alerts, traffic, unemployment, poverty, the endless circus of GOP candidates, finding out your partner had a child with your maid 10 years ago (okay, maybe that one is specific to a certain Kindergarten Cop).
When you are living with HIV/AIDS, stress can be intensified. Okay, that's a total understatement. Stress can be like a tornado swirling with HIV-related debris coming at you from every angle. Doctor's appointments, endless blood work, waiting for results of blood work, HIV medications, additional medications to off-set the countless side-effects of HIV medications, financial strain, treatment fatigue, stigma, discrimination, disclosure issues ... I could go on with this list, yet that would mean this blog post would be insanely long. Plus, we need to move on to the part where we help you relieve the stress.
There is abundant research that shows a clear connection between our minds and bodies, especially as it pertains to stress. Think about it -- when you experience stress, you feel it in your body. Maybe your muscles tighten, your heart races, your stomach gets upset, you have trouble sleeping. These are just some of the ways stress can impact our bodies.
Just as our bodies feel the stress of our minds, we can use our bodies to help relieve the stress. Something as simple as taking a deep breath can work wonders in reducing the impact of stress on our bodies. Try it right now. Take a nice, deep, cleansing breath. It helps us to slow down, to provide our muscles with much-needed oxygen, and to slow our heart rate. Of course, the stressful situation is still here, yet our minds and bodies are much better equipped to deal with the stress.
For those living with HIV/AIDS, using your bodies to minimize stress is essential. The impact of stressful issues can be detrimental to your overall health and well-being. Stress not only negatively affects your body and mind, it also can further compromise your immune system. When feeling excessive stress, your T-cell count can lower. This is true for those without compromised immune systems as well. Yet, if the goal is to raise your T-cell count, how you handle stress can be counter-productive in this goal.
In one of the therapy groups I ran, I had a client who talked about stress relief as a necessity for her. She had a saying that has stuck with me: "Is this situation worth me losing a T cell over?" She would talk about her life, the stress she encountered, and always ask that question. As others would be discussing their stressors, she would ask them the same question. It was incredibly powerful and helped everyone see their lives in a new way.
Now of course I realize this is all easier said than done. "Relieve stress, no problem!" I realize it's not this easy. If it were, there would not be a Self-Help aisle in every single book store across the country. Stress relief is something that takes practice and requires you to be in touch with your body and mind. Do you know where you feel stress in your body? Take a moment to think about it. I listed some of the places above. Maybe you feel stress in all of those places. Maybe your neck tightens, or your jaw locks, or your back aches. Stress settles in our bodies. Only when we pay attention to our bodies can we tell where our stress is and take steps to relieve it.
For me, my muscles tighten and ache. All of my muscles. My face, my hands, my back, even my feet. If I let the stress settle in these places, clearly I would have some trouble getting around. So for me, exercise, stretching and breathing work wonders. As I breathe in, I focus my breath to the muscles that are tight. I breathe out and focus on relaxing those muscles. It helps so much. Of course I've been doing this for years now. It took a ton of practice. So it's okay if you don't feel relief on the first try.
In addition, it's perfectly fine if a strategy doesn't work for you. For some people, breathing doesn't work very well. Especially if you are the type of person who has difficulty focusing or slowing down. It may take more practice, or it may not work effectively at all. That's okay. What works for one person may not work for another. That's the beauty of stress relief -- it's personal and there are a ton of options to try. Keep trying something until you feel some relief.
Here's a brief and not comprehensive list of some stress relieving strategies: breathing, exercise, light stretching/yoga, listening to music, playing music, dancing, quiet time, looking at a calming picture, closing your eyes and visualizing a calm place (like the forest or beach), calling a friend, humor, taking a walk, chocolate, prayer, writing, therapy, reading a good book, taking a bubble bath, massage.
Remember, none of these will take stress away completely. Sorry, I wish I could wave a magic wand and all stress would vanish. These strategies are meant to reduce the impact of stress on your mind and body. To assist you in feeling refreshed, energized, and better equipped to deal with the stress. To help you not lose excess T cells but rather, assist you in feeling healthier and happier.
Try one or more and see what works for you! I plan to discuss many of these more specifically in future posts. Please also feel free to share some of your favorite stress-relieving tips in the comments! The more ideas and tools we all have, the healthier and happier we will all be. So always ask yourself: Is this situation worth losing a T cell over?
IV-positive patients in Uganda, Gulu town, are becoming more self-reliant in an effort to maintain a healthy diet and stay on their antiretroviral medication
Kirombe - The small 10m by 15m garden behind Agnes Oroma's house in northern Uganda's Gulu district is much more than a hobby garden; according to HIV-positive Oroma, it is one of the main reasons she is in good health.
She grows indigenous vegetables and tomatoes to supplement her daily diet of beans, maize meal and silver fish; Oroma also proudly shows off a sisal sack in which she grows onions.
"Do not ignore that little space behind your house, it can do a lot to feed you cheaply and lessen your financial burden that would enable you spend on other essentials to keep you healthy on your daily ARV treatment," 31-year-old Oroma told IRIN/PlusNews.
In the face of rising global fuel prices and a prolonged dry spell, Ugandans are dealing with steep increases in the price of food that have sparked protests in many parts of the country. According to a recent report by the World Bank, the price of maize in Uganda has risen by 114 percent over the past year.
Oroma and other HIV-positive patients in Gulu town are becoming more self-reliant in an effort to maintain a healthy diet and stay on their antiretroviral medication. Oroma's group of backyard farmers has grown to 30 in the past few months.
"Food was my biggest worry for my treatment; I had become weaker because my body didn't have the strength to withstand the potency of the ARV drugs," said Maurine Kilama. "Since I started growing these vegetables, producing more food, I feel a lot of improvement and I have the strength to do other things.
"I now take my medication without worries because I know the food I grow can keep me going for another day," she added.
Kilama said by September 2010, her weight had dipped to 52kg from her usual 58kg; since she started her garden, she has regained 4kg.
"The onions and vegetables I harvested from my small plot in March fetched me 100,000 shillings [$41.60]," she said. "I planted them between November and January; growing them is easy provided you water them early morning and evening."
The money helped to buy food and pay school fees.
However, for many HIV-positive people, already weakened by lack of food, working in a garden is not an option. At Gulu Hospital, 1,792 HIV-positive patients received emergency therapeutic food support in 2010. Since the beginning of 2011, more than 300 have registered.
"Nutrition is affecting HIV care; when we started assessing nutrition we got to know that the patients were undergoing difficult times," said Francesca Achieng, a nutritionist at the hospital. "[Without adequate food] a patient cannot withstand the strength of ARV drugs because of its side-effects, the drugs are toxic, they can destroy your body while they fight to reduce multiplication of the virus in your body."
Patients are assessed and initially given rations of therapeutic food, collected along with their ARVs.
However, many HIV-positive people find themselves back at the emergency feeding centre, unable to pay for costly food. A group of people living with HIV in Gulu has appealed to the government to set up nutritional support programmes to ensure they are able to continue with their ARV regimens.
Rates of hospital admissions, co-morbidities and lipodystrophy are high.
Although 85% of young adults who take antiretroviral therapy have an undetectable viral load, the complexities and complications of lifelong HIV infection are becoming increasingly apparent, researchers told the British HIV Association conference in Bournemouth last week. Rates of hospital admissions, co-morbidities and lipodystrophy are high.
The psychological burden of living with HIV is also heavy. Problems with adherence, mood, anxiety, disclosure and relationships are common, with a few young people self-harming or requiring psychiatric medication.
The issues were raised in a series of studies from St. Mary’s Hospital, the London hospital which for many years has had the largest paediatric HIV clinic in the country and has more recently developed the 900 Clinic, a transitional services to help young people manage the shift from child-friendly services into an adult clinic. In addition, a national survey shed light on adherence issues for young people with HIV.
Tania Wan presented data on the health outcomes of 58 perinatally infected young people who were seen between 2006 and 2011 at the 900 Clinic. The young people transferred from paediatric clinic between the ages of 16 and 18 and their current median age is 20, with the youngest 16 and the oldest 26. Three quarters are black African; there are more women than men.
At their last follow-up, two-thirds of the young people were taking antiretroviral treatment, and 95% of this sub-group had an undetectable viral load.
However there were a considerable number of complications. A fifth of patients had a CD4 cell count below 200 cells/mm3. A few of those with undetectable viral load had failed to fully restore their immune function.
At the time of last follow-up, a quarter had chosen to discontinue antiretroviral treatment, despite considerable support and intervention from clinic staff. Just under half of this group had a CD4 cell count below 200 cells/mm3.
There have been seven pregnancies (with no HIV transmissions).
A quarter had at some stage been admitted to hospital as an inpatient, staying a median of nine days. Four had intentionally taken drug overdoses; two hospitalisations were linked to the opportunistic infections PCP and MAI; one 22 year old was admitted following a stroke and osteocronosis (loss of blood supply to the bones).
Two individuals died, at the ages of 20 and 21. One had refused antiretroviral therapy; the other had developed multiple drug resistance.
One in eight had severe lipodystrophy, with several requiring surgery or injectable fillers.
The high levels of psychological need in this group were described in a poster from Graham Frize and colleagues at St. Mary’s. For this analysis, the psychology case notes were checked for 63 young adults attending the clinic between 2008 and 2010.
Just over half were identified as having clinically significant psychological issues, whereas in this age group of the general population, the figure is 13 – 16%. These individuals were all referred for psychological interventions but a quarter did not take up the service. Young men were more likely to decline psychological services than women.
The most common problems were mood, anxiety, adherence, disclosure and relationships, but people usually presented with more than one issue.
Commonly reported stressors include difficult family relationships, lack of social support, housing problems, financial problems and health problems. Several had concerns about body image.
A quarter of clinic patients (17 people) were considered to have complex needs. Five had self-harmed by taking a drug overdose (including the four requiring hospitalisation as previously mentioned). Eight have been prescribed psychiatric medication. Four were referred for neuropsychological testing due to concerns about the impact of neurocognitive impairment on their functioning.
Given the results of this analysis, St. Mary’s have decided to offer an annual psychological review for this group of patients. This will involve tests to assess psychological distress as well as physical and mental health-related quality of life.
Adherence to medication is challenging for this group and a problem which drives many of the health complications described above. Another poster from St. Mary’s reviewed adherence and treatment response in young people, both while they were attending the paediatric clinic and later when they attended adult services.
Individuals who had good self-reported adherence in childhood generally maintained the same behaviour as young adults and continued to have good treatment response. Similarly, those with poor adherence in childhood most commonly continued to have difficulties, with sub-optimal clinical outcomes.
This is despite the provision of intensive support in both the paediatric and adult services including provision from psychologists, peers and the voluntary sector; practical adherence aids; directly observed therapy and the use of gastrostomy tubes into the stomach.
The researchers suggest that as adherence patterns appear to be established in childhood, it is essential to support adherence when children begin therapy in order to promote long-term adherence and survival.
The final study, from Susan McDonald and colleagues is a national survey of young people with HIV aged 12 to 24, in order to review their feelings and concerns about adherence. A total of 138 took part, with a median age of 16, and once again there was greater participation from females than males.
Just under two-thirds (62%) reported adhering to at least 95% of their doses, mirroring the 66% who said that their viral load was undetectable.
Only a third used practical adherence tools such as pill boxes, alarms, keeping medication in a place that helps them remember or carrying a spare dose with them.
When asked what helped them adhere, the participants were more likely to mention reminders and support from family, carers and peers - just under half mentioned this. Not being able to take treatment in front of family or friends (due to disclosure issues) negatively affected the adherence on a fifth of respondents. Some mentioned that if they didn’t need to keep HIV such a secret, their adherence would improve.
Drug side effects were described as a factor that had contributed to treatment interruptions and to missing doses by many participants. Fewer side effects, fewer pills and once-daily regimens were thought to help adherence.
One respondent described the reasons behind a treatment interruption: “Feeling depressed and there are times when you don’t feel like taking them because you feel well and when you feel them you feel ill.”
Another respondent’s comment on what could help adherence was: “I don’t know really, I like the challenge, every day’s a victory, peer support has given me insight.”
Brain Impairment may in fact be little higher than in the general population.
Two studies presented at the17th British HIV Association (BHIVA) conference last week suggest that the proportion of people who have subtle brain impairment due to HIV may not be as high as previously thought, and may in fact be little higher than in the general population.
Several studies measuring neurocognitive impairment (deficits in memory, thinking and movement) in people with HIV in the last few years have concluded that a high proportion of people with HIV have subtle impairments. These may not cause symptoms that interfere with daily life, but can be detected by psychological tests.
About 16% of the general population has some degree of neurocognitive deficit. It therefore caused a lot of concern when in 2010 the large CHARTER trial in the USA found that 52% of 1526 people with HIV had evidence of neurocognitive impairment.
A quarter of these people had other conditions that were probably the major cause of their brain impairment, but that still meant that 39% of all HIV-positive patients had brain impairment without any other obvious cause, and 36% of patients who had never had an HIV-related illness. Of these 71%, or 28% of the entire group, had no obvious neurological symptoms. CHARTER, therefore, suggested that HIV more than doubled the risk of brain impairment in otherwise healthy people, raising concerns that it might become even more common with age.
One study presented at BHIVA, however, found a rate of asymptomatic neurocognitive impairment of only 19% in a group of patients with suppressed viral loads, very little in excess of the general population rate. Another study found that young people who had been born with HIV had rates of neurocognitive impairment no higher than their HIV-negative siblings. This study, and a third study that looked at rates of neurocognitive impairment in the over-50s, found some evidence that some psychological tests that rely on self-report might not be detecting actual difficulties in thinking and memory, but rather people’s fear of them.
The St Mary’s Study
Dr Lucy Garvey from St Mary’s and Hammersmith Hospitals in west London reported on a survey (which won a prize for best presentation at the conference) of 101 patients who were on stable antiretroviral therapy without any obvious neurological symptoms or other illnesses. They had all had HIV for more than six months.
The study subjects were given two types of psychological test, a 20-minute computerised cognitive assessment test called Cogstate, and the International HIV Dementia Scale (IHDS), a short, validated screening test for dementia employing three simple memory and motor tasks.
Neurocognitive impairment was defined as scores more than one standard deviation below the mean age-matched population data in at least two areas of functioning - roughly within the lowest one-sixth of performance scores.
The median age of the subjects was 53, and the majority (77%) where white men. They had been HIV-positive for an average of 14 years, with a mean CD4 count of 559 and lowest-ever CD4 count (nadir) of 185. A high proportion – 25% - had hepatitis C, which is also associated with neurocognitive disorders.
The overall rate of neurocognitive impairment was 19% in this group, only 3% above the rate in the general population. The pattern of domains affected was familiar from other studies of people with HIV, in that fine muscular movement, multitasking and executive function (prioritising and planning) were particularly impaired, and CD4 nadir was associated with a high IHDS score, but nonetheless the impairments seen were slight.
“Many cohorts have reported HIV-associated neurological disorder, but their antiretroviral therapy status and health have been widely variable,” commented Dr Garvey. “This is one of the first studies to look at neurocognitive impairment only in stable HIV-asymptomatic patients on suppressive antiretroviral therapy.”
The St Mary’s team will now conduct further studies to look at neurocognitive disorder in drug-naive patients with unsuppressed HIV.
Young people and brain impairment
The results from this study were echoed by another study from St Mary’s that looked at neurocognitive function in young people who had been born with HIV. It studied 31 young people aged 16-25 (mean age 20) and compared their performance with 14 of their HIV-negative siblings. The two groups were matched for age, ethnicity (both 85% black African) and gender (33% and 29% respectively were male in the positive and negative groups). Seventy-nine per cent of the positive subjects were on antiretrovirals of whom 70% were virally suppressed (55% of the whole group).
These subjects were given the Cogstate computerised tests and the IHDS, and were also given the prospective and retrospective memory scale (PRMQ) questionnaire, a self-reported rating of problems with recall and retention of information. A minority of both groups were also given an MRI brain scan to detect signs of inflammation.
The positive and negative group had identical scores on the IHDS and on the Cogstate test in all domains. The PRMQ score was significantly worse (p=0.023) for the HIV-positive young people, and there were also high levels of activity of certain neurotransmitters in the basal ganglia area of the brain, a finding seen in other studies.
However presenter Jane Ashby commented that the PRMQ questionnaire, as a self-report, could measure subjects’ concern about memory problems as much as actual ones, and so far no study in HIV has actually established whether the inflammation seen in MRI scans is actually associated with neurocognitive performance.
Screening for brain impairment
The idea that some psychological tools might be reporting HIV-positive people’s fears of dementia rather than actual impairment, and might over-report neurological problems, has led London’s first dedicated HIV clinic for people over 50 at the Chelsea and Westminster Hospital to include two ten-minute psychological questionnaires for generalised anxiety disorder and depression as standard first steps in psychological assessment of patients, only proceeding to tests for neurological function once these are eliminated.
The researchers comment that “high levels of anxiety, depression and concern about cognitive function” are common in older patients and that “memory loss, mental slowing and psychomotor disorder are common manifestations of these conditions” and should therefore be assessed and treated first.
Fertility treatments can be done safely and effectively in couples where the man is infected with the AIDS virus and the women isn't
Fertility treatments can be done safely and effectively in couples where the man is infected with the AIDS virus and the women isn't, according to a new review of past studies.
Over the last 2 decades, researchers have improved methods of "washing" the semen of men infected with HIV, the virus that causes AIDS. Unwashed semen could pass HIV to the woman or their baby.
"I think the procedure is getting safer and safer," said Dr. Deborah Anderson, a scientist at the Boston University School of Medicine who studies HIV. She was not involved in the current research, but she told Reuters Health that washing the man's semen lowers the risk of transmission enough that "it's an acceptable ... procedure for couples that really want to have children."
In the new review, published in the journal Fertility and Sterility, researchers from the Evandro Chagas Clinical Research Institute in Rio de Janeiro, Brazil looked at 17 earlier studies involving a total of about 1,800 couples in which only the male partner had HIV.
In each of the studies, researchers performed one of two common types of fertility treatments after washing the semen. Then they recorded how often women became pregnant after the procedures. They also monitored the women and any babies they had as a result of the procedures, to see whether HIV had been passed on from the semen.
About a third of the women had a procedure in which a single sperm is injected into a single egg; then the fertilized egg is placed into the woman's womb. This kind of fertility treatment is assumed to be safer for couples in which the male partner has HIV because it is easier to ensure that the sperm being used does not have the HIV virus.
The rest of the women had sperm injected directly into the womb, when their eggs were most likely to be there.
Ultimately, roughly half the women became pregnant, and about 80 to 85 percent of the pregnancies resulted in the birth of a baby.
The success rates for pregnancy were comparable to what has been shown in other studies of fertility treatment in couples without HIV. If anything, couples in the current study may have been more likely to get pregnant using fertility treatments because many of them had no underlying fertility problems, the authors say.
None of the women in the study, or babies that were born after fertility treatments, tested positive for HIV. However, in a few of the studies in which researchers tested semen after it was washed, between two and eight of every 100 samples tested positive for HIV - indicating that it still may be possible, if unlikely, for the virus to be passed either to the woman or to the fetus.
However, the findings are "very reassuring," according to Dr. Elizabeth Ginsburg of the Brigham and Women's Hospital Center for Reproductive Medicine in Boston.
Ginsburg, who was not involved in the study, said that even if some of the samples did test positive for HIV, the amount of the virus was probably so small that it wasn't likely to be passed to the mother or baby. In addition, she said, HIV transmission requires some sort of trauma to the woman's body because the virus is passed from semen to blood, and although there's a chance of that in intercourse, it's not likely in fertility treatment.
Despite mounting evidence of its safety, fertility procedures are not very common in couples in which the male partner has HIV. In part that's because the procedures aren't often covered by insurance, Ginsburg said. Although some fertility procedures may be as inexpensive as $1,000, others run many times higher.
"One of the things that is a shame is that when couples can't afford fertility treatment, they're stuck with the other option, which is having timed intercourse, and that puts the woman at risk," Ginsburg said.
Anderson said a new option for these couples might become available in the future -- medications that the woman can take to avoid getting the virus from her partner who has HIV. And, "if the mom doesn't get it, the baby's not going to get it," she said. "I think that's going to be the future of this field."
So far, only a couple of early studies have been done on the drugs' effectiveness at preventing transmission of the virus, and for now, Anderson said, fertility treatment is the safest possible option for these couples.
Bringing up a child born with HIV can be daunting, especially when the child reaches adolescence and starts being curious about sex. But, finally, there is some help for teens with HIV and their families.
Bringing up a child born with HIV can be daunting, especially when the child reaches adolescence and starts being curious about sex. But, finally, there is some help for teens with HIV and their families.
Young people born with HIV have very few outlets to freely speak about their lives with HIV. Parents, care-givers and health workers are often ill-equipped to respond to their needs. As a result, their sexual and reproductive health needs are not adequately addressed. This is what researchers Marnie Vujovic and Saranne Meyersfeld discovered while working children aged 10 – 14 who were born with HIV.
“Addressing sexual and reproductive health issues at this age is a particularly important aspect of care. And, in fact, early adolescence is often seen as a window of opportunity where health care providers are afforded the opportunity to reach young people before they become sexually active. Young people can start to acquire the skills, the attitude, the knowledge that they need for their future well-being”, said Marnie Vuyovic, one of the two researchers who conducted the study.
No one has focused on helping young people who are already HIV-positive. So, Vujovic and Meyersfeld, research consultants for Anova Health Institute, have written a manual to help them.
“Importantly, I think, we identified the need for developmentally appropriate resources that would take into account the different needs of HIV-positive boys and girls and, also, we’re providing with the information that they need to make responsible decisions about their sexual and reproductive health. This project has really been about developing a reproductive health tool that can be used by health providers to provide HIV-positive children in early adolescence, for example, by building positive gender, attitudes, self-esteem, decision-making, communication skills… all of those important aspects of well-being”, Vuyovic said.
Vuyovic said that increased access to antiretroviral therapy and wide-spread HIV testing means that many children infected through mother-to-child HIV transmission are surviving into adolescence and beyond. As a result, the necessity to address their sexual and reproductive health needs is readily apparent.
“South Africa has the highest number of children living with HIV, estimated at around 280 000 below the age of 15. In 2006, there were about 64 000 children who were infected with HIV from their mothers. In the older age group, 15 – 18 years of age, children are largely infected through unprotected intercourse”, she said.
Given the number of children growing up HIV-positive, it is rather startling that a significant number of the children involved in the study were not even aware of their HIV-positive status. Study researchers denied us access to interview the child participants in the study because of that and other ethical considerations. Fellow research consultant, Saranne Meyersfeld, explained why it was that many of the children did not know that they had HIV.
“This is a very complicated subject. Care-givers (and) parents don’t know how to disclose to their kids. They are scared. Stigma, obviously, comes into it. The parents are scared that the child will inadvertently speak about their positive status and, then, it incriminates the entire family, which brings the tidal wave of stigma and discrimination right on the family”, said Meyersfeld.
However, if possible, she said parents and care-givers to disclose to children as early as possible that they have HIV infection.
“Start as young as possible”, she said. “Take your cue from the child: ‘Why am I going to the hospital’? ‘Well, there’s a problem with a germ in your blood’, at two. There are lots of books that are relatable to advise the care-giver, the parent, the heath care team on appropriate ways of introducing the subject of disclosure to the child. If a child feels comfortable and trust has been built up, there’s a lot more chance that they will ask pertinent questions and the care-giver can be guided by them”, Meyersfeld advised.
She said it is natural that the pertinent questions will take on a different turn as they reach adolescence.
“They are concerned about disclosure to partners. They are concerned about the possibility of being able to have babies”.
“Something that comes up frequently is: “Will I see myself as a mum or dad in the future”? “But will I be able to have children”?, Marnie Vujovic concurs.
“And those are the kind of questions that are really concerning and those are the kind of questions that we need to be able to answer”, she said.
She added that the needs and desires of of HIV-positive adolescents are no different from those of their uninfected peers.
“We also have to bear in mind that being positive does not mean that a young person can’t enjoy or express his or her sexuality, but it does mean that they need to deal with the identity of being HIV-positive at an early age. And they will need to negotiate different aspects of the illness which can impact on their sexual and reproductive health”.
Vujovic and Meyersfeld believe that the manual will empower parents, care-givers and health care providers to advise HIV-positive adolescents accordingly and that the adolescents themselves will be able to navigate around making healthy choices for their continued well-being.
“The more empowered children are in their own health and understand what’s going on with them, they know what the risks are and what the benefits are for ARVs... then the better adherence to their treatment and the more they speak openly about it”.
Sharing a child’s HIV status with them can be a difficult for a caregiver, but according to the Wits Institute for Health HIV and Related Diseases, disclosure has incredible benefits. This week, Health-e News visited an HIV-positive nine year-old boy who proves that early disclosure could be advantageous.
Tebogo Moroke is a small built, almost fragile boy. His eyes are glassy and he doesn’t look his age. What’s captivating about him is his optimism about life and his future. In his young life, he already has to live with the reality of being HIV-positive and the responsibility that comes with it. But, unlike worrying about the disease, he says he is living a ‘stress-free life’. What is remarkable is that Tebogo is using his time to teach others like his friends about HIV/AIDS.
“When they fall down while we’re playing and I see blood, I tell them that they should not touch each other’s blood. They should go to their mommies and ask for bandages after the wound has been cleaned. Don’t do bad things because you can get HIV or TB or another illness”.
Tebogo has lived with HIV since birth. He had a twin sister who succumbed to death after falling ill when they were three months old. After that Tebogo survived nearly four years of going in and out of hospital, with doctors showing little faith that he would make it. As a result of his ordeal, his dream is to become a doctor to help children just like him.
“When I grow up I want to be a doctor because I like it and that I can help other kids who are HIV-positive take their medication. And I want them to be alright and healthy. Like me, I am healthy because when I play with other children I don’t say I’m tired. I continue playing all the time”, he says.
His friends have embraced him and his status. They say they learn a lot from Tebogo everyday and that his HIV status has never been an issue.
“Tebogo is my friend. We play together all sorts of games. He is a good friend and I enjoy playing with him”, says one of his friends.
“I enjoy playing with Tebogo. He’s my friend. He even advises us on how to behave. He warns us not to fight with him or make him fall because he could bleed and that could be dangerous. I love everything about him”, says another.
“Tebogo is a very good friend of mine. We play all the time when we come back from school. He is a good friend that doesn’t like fighting. We treat him normally like our other friends”, another enthuses.
Tebogo is an inspiration to his mother and the community where they live. His mother, Vivian Moroke, says she only found out that Tebogo is HIV-positive when he was eight months old after requesting the nurses to do an HIV test on him. The first four years of his life were not promising as he was gravely ill. Vivian says the news of her son being HIV-positive was shattering.
“It was hard to accept the fact that he is HIV-positive. But the nurses gave me the necessary support. I was stressed out while he was in and out of hospital. His health was not promising at all. I even had to resign at work in 2003, so I could look after him”, she explains.
But the trauma did not end there for the Moroke family. In 2005, Tebogo’s condition worsened. He had full-blown AIDS and was bed-ridden.
“He stopped walking or crawling. He had full-blown AIDS and the doctors were afraid he might die. They tried so much to help him. He slowly started improving and regained his strength and mobility. I told him when he was four years-old that he is HIV-positive and I used Nkosi Johnson as a model for him to draw strength and he did. We’ve never looked back since that day”, says Vivian.
According to the Wits Institute for Sexual Reproductive Health HIV and Related Diseases, Tebogo is a great example of how beneficial it is for children to know their HIV status. Nataly Woollett from the organisation’s Prevention and Counselling Programme says they encourage care-givers to disclose to their little ones as early as they can.
“The more empowered children are in their own health and understand what’s going on with them, they know what the risks are and what the benefits are for ARVs... then the better adherence to their treatment and the more they speak openly about it”.
She says those who have not been disclosed to, but suspect that they are HIV-positive tend to isolate themselves.
“Self-esteem takes a knock because it is like knowing the big secret, but nobody in the family talks about it. They feel completely disempowered and think something is wrong with them. Children don’t necessarily see their options in that situation - whatever good or bad that happens in the universe, they blame themselves. They subscribe to themselves that they are literally bad kids and that’s how their self-esteem takes a knock”, says Woollett.
The organisation offers counselling sessions to care-givers on how best to disclose to their children. However, Woollett warns that the environment, particularly within the family, has to be conducive for disclosure.
There were therefore unanswered questions about the efficacy of vaccinations.
Recommendations that patients with HIV should be vaccinated against influenza “are justified,” according to an editorial in the January 1st edition of Clinical Infectious Diseases, and the use of the vaccine “should be encouraged.”
The author, Dr Raphael Dolin of the Harvard Medical School, reviewed three studies published in the same edition of the journal that examined the safety and efficacy of influenza vaccination in patients with HIV.
Numerous studies have previously examined the impact of influenza vaccination on patients with HIV. However, these produced inconsistent results and many were conducted before the introduction of effective antiretroviral therapy.
There were therefore unanswered questions about the efficacy of vaccinations.
So in 2009 investigators in South Africa undertook a study to compare the effectiveness of the vaccine against influenza A H1N1 (swine flu) in HIV-positive and HIV-negative patients. All were aged between 18 and 50 and received a single dose of the vaccine via injection.
The HIV-positive patients had a median CD4 cell count of 581 cells/mm3 and 82% were taking antiretrovirals. Despite having well-preserved immune function individuals with HIV were significantly less likely than HIV-negative patients to develop protective antibodies against influenza after receiving the vaccine (56% vs. 80%, p = 0.003).
Some investigators have suggested that the provision of additional doses would improve responses to influenza vaccination among patients with HIV. This question was examined in a German study.
A total of 135 patients were recruited and received two doses of the H1N1 vaccine. Antibody responses were monitored 21 days after the administration of each dose. After the first injection, 68% developed protective antibodies. This increased to 92% after the administration of the second injection. A higher CD4 cell count was associated with antibody responses to the vaccinations.
There are also questions about the impact of influenza immunisation on CD4 cell count and viral load and the clinical effectiveness of vaccination. These issues were addressed in a third study published in the journal.
The research was conducted in South Africa and involved 506 HIV-positive adults, 349 of whom were taking antiretroviral therapy. The patients were randomised to receive the trivalent, inactivated influenza vaccine. The World Health Organization recommended this vaccine for use in the Southern Hemisphere in 2008.
Dr Dolin praised the study as “well-designed and conducted.” However, he noted that patients with more advanced HIV infection were excluded from participation in this study, as were those with co-morbidities that are associated with influenza complications.
Vaccination did not reduce CD4 cell count or increase viral load among the patients taking HIV therapy.
In addition, receipt of the vaccine reduced the risk of laboratory confirmed influenza by 76%.
Recommendations that patients with HIV should be vaccinated against influenza are therefore justified and individuals should be encouraged to receive them, concluded Dr Dolin.
He added that efforts are still required to improve immune responses to vaccination, and studies should be undertaken on the effects of “additional doses, modified vaccination regimens, and novel adjuvants and novel influenza vaccines in this patient population.”
"Because I've tested myself and I've tested my children," Rose said, "I've managed to get a grandchild who is HIV-free"
The last time I was in Kampala, I met a brother and sister who had contracted HIV from their mother. The boy, whom I will call Peter (I've also changed the names of his friends and family), was just two days shy of his 16th birthday, and betrayed no visible signs of sickness. When I was introduced to him, in the Uganda offices of the Elizabeth Glaser Pediatric AIDS Foundation, not far from the city center, he was wearing his school uniform, a dark- green sweater over a white collared shirt. He looked a little bookish, with a round face, thin wire-rimmed glasses, and hair cropped tight to his skull.
I sat with Peter at the corner of a long conference table, and he quietly told me his case history. He'd been sick often as a child, he said, fighting off fevers, diarrhea, painful blisters, and hacking coughs. But it wasn't until he was 10 that he learned that he was infected with HIV. His mother, then expecting her sixth child, had tested positive during a prenatal HIV test and brought her children in to be examined. In Uganda, patients qualify for anti retroviral treatment when their CD4 count, a rough measure of the health of the immune system, falls below 250. Peter's clocked in at 54. He was immediately started on medication, a cocktail of pills taken twice a day.
With treatment, he remembers, his health improved quickly and dramatically. But then, at age 13, the markers of his illness returned: diarrhea, fevers, vomiting. While we spoke, he pulled up the sleeves of his sweater to show me where the rashes had come back. "These are scars from them," he said. "They come like sores, too many sores. When you scratch it, there comes a wound."
Not coincidentally, 13 was also the age at which Peter had begun boarding school--a common form of education in Uganda, even for low-income families. He lived in a cramped dormitory with about 40 other children and little privacy. Peter was keen to keep his condition secret, so he had arranged to store keep his pills in the assistant headmaster's office, on the far side of the school. "I had to wake up very early in the morning, before anyone sees me, to go in and take the medicine," Peter told me. "And then I had to come back, prepare myself, go to classes." In the evening, he would trek to the office again for another dose. But his office visits did not go unnoticed, and one day a couple of classmates walked in on him while he was taking his pills. Peter told them that the medication was for asthma, but they didn't believe him.
Their suspicions were confirmed, more or less, by Peter's English teacher, a tall, skinny man from northern Uganda, who would lecture the class on the evils of AIDS. "He would say, 'Some of us in class here, they didn't tell us they're HIV- positive. But we teachers, we know,' " Peter said. "He used to point at me, so that my friends started asking me, why is he always pointing at me." The man grew disdainful, calling Peter "useless" and "good for nothing," refrains quickly picked up by the children.
The taunts become more direct. When Peter coughed, a classmate would call out, "Remove your HIV from us!" "You didn't abstain well," a fellow student would sing; you're "a disgrace to your parents," another would jeer. A few close friends refused to believe the rumors, but mostly, the students shunned him. "You would give them something to eat, they would refuse it," he said. "They don't like sitting with you. They don't want to share anything with you." His peers began calling him a "zombie," Peter said, "someone is dead but still walking." Some older kids at the school began bullying and beating him.
For a while, Peter tried to sidestep his problems by skipping school. He'd sneak off campus in the morning to play soccer with local boys. But at some point during the school year, his avoidance took a different turn. Tired of the twice-daily office visits, of the constant needling, of being reminded day after day of his condition, he simply stopped taking his pills. "For me, it felt good," he said. "Because I knew I was going to leave those people who were discriminating against me and go somewhere else."
What followed was entirely predictable: Peter's health deteriorated rapidly, and his classmates shunned him all the more aggressively. Bouts of illness would leave him dehydrated and exhausted. One friend, a young man named Andrew, stayed true to Peter, helping him gather his books when he was strong enough to attend class--and nursing him when he wasn't. "He would wash me," said Peter said, "because I wasn't having strength to wash myself." As Peter's health worsened, Andrew sought permission to bring him back to his mother, and eventually took him to her, carrying him home on his back. Andrew refused to believe his friend was suffering from AIDS, Peter told me. And Peter never managed to tell him. "He's my closest friend," Peter said. "He knows everything about me. But I've failed to tell him that I'm HIV-positive."
When I met Peter, he was back on his medication--his hiatus had lasted about six months--and he looked healthy. His mother had gotten him medical care when he came home, and when his story came out, she got him free counseling as well, and enrolled him in a Catholic day school, where it would be easier to hide the fact that he was taking pills. But his lapse was not without permanent consequences. The virus in his body had become resistant to the treatment he had been taking, and his doctor had switched him onto an alternate regimen. When I asked Peter what he envisioned for his future, he told me he wanted to become a lawyer to help people in his community. His other hope, he said, was simply to survive. Taking medicine every day for the rest of your life is difficult, he said. He couldn't afford another mistake. "This is the second line," Peter told me. "And there's no third line."
A fatal disease can only be endured; a manageable one has to be managed. Perhaps 1.8-million Africans younger than 15 are living with HIV, the vast majority infected by their mothers during pregnancy, birth, or breast-feeding. In the developed world, transmission of the virus from mother to child has been all but eliminated. But in Africa, where caesareans are uncommon and many mothers can't afford to buy formula, an estimated 390,000 children younger than 15 were newly infected with HIV in 2008.
Until recently, African children born with HIV were expected to die young; roughly half never made it to their second birthday, and only 10 percent reached adolescence. But a massive rollout of anti retroviral medication, begun in 2003 and largely funded by the United States, has dramatically changed the picture. Today, more than 2 million people in sub-Saharan Africa are taking anti retroviral drugs (including 200,000 Ugandans), up from fewer than 50,000 in 2002. More than a million lives have already been saved as a result of the program, the largest public-health effort ever devoted to a single disease, and perhaps the most positive legacy of George W. Bush's presidency.
Sabrina Bakeera-Kitaka, a doctor at the Pediatrics Infectious Diseases Clinic in Kampala's Mulago Hospital, remembers opening a clinic in 2003 for adolescents who had been wrestling with the virus since infancy. "They were really short, stunted, and very wasted," says Bakeera-Kitaka. "You'd have a 16-year-old girl who hadn't started her menstrual cycle, or who hasn't developed any breast development, a 17-year-old boy who hasn't gotten any pubic hair. They were riddled with all sorts of diseases: tuberculosis, recurrent malaria, persistent diarrhea." But the drugs have changed all that. Today, Bakeera-Kitaka's patients are indistinguishable from their healthy peers.
In 2008, the World Health Organization began recommending that all infants born with HIV be medicated immediately. As treatment continues to roll out, more and more children like Peter will have a chance to reach adulthood.
Yet the teenage years, when not-yet-mature patients begin to take responsibility for themselves, are perilous for bearers of a chronic disease. Doctors studying diabetes track hemoglobin levels to measure how well a patient is sticking with the treatment. These tend to shoot up as children approach adulthood. "Obviously they're not taking as good care of themselves as when their parents were in charge," said Laura Stoppelbein, a psychology professor at the University of Mississippi Medical Center, who has studied treatment adherence among diabetics. "Adolescents don't tend to have a great appreciation for the long term. It's more like, 'My friends are here, and I don't want to be embarrassed and have to get my blood checker out or take a shot, so I'll skip it.' As opposed to thinking, 'In the long term, if I continue to skip, I'm going to have kidney disease or eye problems or circulation problems.'"
AIDS is easier to control than diabetes. Rather than having to continually monitor blood sugar in order to regulate their insulin level, patients simply need to take pills once or twice a day. Once firmly established on a treatment regimen, they can check its progress with their doctor as seldom as twice a year. But for HIV-positive people in places like Uganda, there are also a lot more reasons therapy is likely to fall apart. Shattered families, poor education, or the lack of bus fare to the clinic can come between a patient and the medication. "Many of those who fail on their treatment have poor social support," said Kitaka. "They have multiple caregivers. They are in boarding school."
The stigma of HIV is crushing in Uganda, as in much of Africa, and the incentives to hide the disease are immense. Many infected people are forced by their family members to use their own cups and plates, which are kept segregated from the family's dinnerware. When money is tight, infected children are the first to be pulled from school. The sense of shame is so strong that some HIV-positive mothers will breast-feed their babies, at the risk of passing on the virus, rather than raise suspicions. "Her relatives will be asking her, 'Why aren't you breast-feeding this baby?' " Kitaka told me. Because the disease is associated with sex, its victims are typically regarded as sinful, licentious, undisciplined--and unworthy of sympathy.
Among adolescents--prone, the world over, to easily mix judgment, hypocrisy, and naïveté--these sentiments seem particularly sharp. And for those who slip up in their treatment, the consequences can be unforgiving. "You don't get many chances in Africa with medication," said Yuka Manabe, head of research at the Mulago Hospital's Infectious Disease Institute and a professor at Johns Hopkins University. Whereas in the United States, 24 different drugs can be combined into many different types of therapies, options in the developing world are limited. "You get a first-line regimen, and you might get a second-line regimen if you're lucky," Manabe said. In a region where finances form the barrier to the availability of drugs, allowing the virus to build up resistance has dire consequences. "For every person that goes on second-line therapy here, nine people will [have to be denied] first-line therapy," Manabe explained--the alternate treatment is that much more expensive. "These are tough decisions. Is your first allegiance to the people who have been on? Or should it be on trying to give as many people access as possible? And if you blow it, 'Sorry'?"
Peter's sister, Beatrice, has never been sick. Nineteen years old, with delicate cheekbones, a small nose, full lips, and thin eyebrows, she wears her hair straightened and parted. When I met her at the offices of the Elizabeth Glaser Foundation, she was wearing a tight, sleeveless yellow T-shirt with California in pink across the front. While we spoke, she wrapped a blanket around her shoulders against the chill of the air conditioner. She didn't look like a woman who has grown up with the virus, and indeed, although she'd started medication within the past year, she'd been asymptomatic her entire life.
When she learned she was HIV-positive, Beatrice told me, she didn't really believe it. "I thought it was a bad joke," she said. "But as time went on and my brother still went on being sick, I really realized it." She was 15 years old, still in school. Overwhelmed, she soon dropped out and ran away from home, staying for a while with a group of musicians. For a long time, she behaved as if she had never been told she was infected. Medication was unnecessary--her CD4 counts were still high. She had a boyfriend, a young barber named Jeremy, whom she had met at a nightclub when she was 14. She didn't tell him she was HIV-positive, and she continued to have sex with him after she found out; eventually, she moved in with him. Only after discovering that she was pregnant last year did she begin to take steps to control the virus, enrolling in anti-retroviral therapy to avoid transmitting HIV to her baby.
Beatrice wasn't a model patient, she told me, sometimes skipping her medicine when she couldn't bear the thought of taking it and hence affirming her condition. She still didn't tell her boyfriend that she was putting him at risk. He found out only by accident, when a local newspaper published Beatrice's picture and name in a story about living with AIDS, reported during a counseling session she had attended. "He showed me the newspaper, the whole story about my family... everything," Beatrice said. "My brother's name was there. My mother's name was there. My name. My photo." He was furious, she said, and threw her out of the house. "He told me, 'Bea, please go away. Get out and go away. I don't want to see you in my life again. Plus your baby, go! If you want him to die, bring him here. I'll kill him, and [so what if they] put me in prison, because I know I'm also dead.'"
The newspaper story transformed Beatrice's life. "Whenever you pass someone, they call to you, 'Hello, I saw you in that newspaper. You're sick. You're HIV-positive.' I just keep quiet. I walk away. And then another tells you that. Another one tells you that." Beatrice seldom goes to the discothèque where she met Jeremy anymore--she'd see too many familiar faces, few of them friendly. Most nights, when she can scrape together the money, she drinks beer by herself in the small room she now rents, far away from her old neighborhood. "For me, nowadays, I live alone, stay alone, sit alone," she said. Sometimes she goes to a nightclub far from her house where nobody knows her. If someone tries to pick her up, she just leaves.
I asked Beatrice why she took precautions to protect her baby, but not her boyfriend. "I didn't trust him so much," she said. "At first, he moved with too many girlfriends. Whenever I'd come, I'd find four or five condoms. I'd find women there... But for the baby, it was so innocent. I thought of him being sick, me being sick, my mother being sick. So I rushed to the hospital."
I asked if she would tell her next boyfriend about her disease. "For sure I will not tell him," she said. "I know what I've faced. If I tell him, I know that he is also going to drop me." She was fatalistic about the further spread of the disease, and her own role in it. "You can't tell me that someone can abstain from loving someone. And you can't stay with someone for four years and still use condoms."
As treatment for AIDS becomes more widely available, more and more children living with HIV will reach an age when they and their peers begin falling in love. "In the past, they would be so sick, they would be busy trying to keep alive for one extra week, for one extra month, for one extra year," said Peter Mugyenyi, the head of Uganda's Joint Clinical Research Center, the largest provider of anti retroviral drugs in Africa. "But now they are healthy. They are energetic. Their sexual drive is back. You have to start addressing sexuality in the era of AIDS treatment, as opposed to sexuality in the era of AIDS death."
When Sabrina Bakeera-Kitaka polled HIV-positive adolescents in her clinic, she found a wide variety of sexual experience, but little sexual knowledge. One in four of the patients she surveyed reported having had sex. One respondent counted 13 partners. Three couldn't remember how many partners they had gone to bed with. Of the 800 adolescents enrolled in her program, more than 40 girls were expecting children or had already become parents. "Some of them have this thing, that 'I have to leave a legacy,' " Kitaka said. " 'Mother died, and who knows if I'm not going to die?' Some have insinuated that people at home are pressuring them to get babies. In some societies in this country, if you don't have a baby by 18 years or so, then you're not a woman."
Bakeera-Kitaka's study also found that the patients in her program understood little about the risks to which they were subjecting their sexual partners. Some boys thought that semen did not carry HIV; some girls thought the virus would bleed away during menstruation. Most alarming, some said they wouldn't disclose their infection to their partners, out of fear of rejection--and that they preferred partners who were HIV-negative.
According to the United Nations, young people between the ages of 15 and 24 account for nearly half of the world's new infections. The public-health risk is compounded when adolescents struggle to keep up with their treatment. Medication lowers patients' viral loads and thus their infectiousness, but only if the regimen is accurately followed. Diabetes may be harder to control than AIDS, but skipping a shot doesn't make diabetes stronger or increase the chances you'll pass it on. As Bakeera-Kitaka said, "There's no bigger catastrophe than having a whole group of adolescents spreading a resistant virus."
Peter and Beatrice's 41-year-old mother, Rose, lives on the outskirts of Kampala in a large house she built with her husband before he died suddenly in 1994. The electricity was out on the day I visited them. We sat on sunken couches in the living room; light shone through the doorway onto the bare concrete floor. The house was unfinished. Yellow walls rose up to meet bare rafters and the underside of the metal roof.
The newspaper article that upended Beatrice's life affected her mother's as well. Rose had taken in Beatrice's son, a round-cheeked 8-month-old boy we passed from lap to lap while we talked. She had scraped together enough money to help with her daughter's rent, but she herself had stayed behind, and she has continued to endure scorn from her neighbors. "People don't want their children to come and play with my children," she said. She pointed to a pile of bricks in the yard: "I want to fence myself in and stay inside."
As better access to medication slowly turns HIV from a death sentence into a chronic disease, one might think that the shame associated with its impacts--emaciation, infirmity, death--would start to fade. That may yet happen in Uganda, but it hasn't so far. Indeed, in some respects, the shame has only grown. In part, that's Bush's other African legacy: the flood of anti retroviral drugs has been accompanied by a rising emphasis on a rigid morality. Until 2008, the U.S. AIDS plan contained an explicit requirement that one-third of the resources dedicated to preventing new infections be directed toward programs promoting abstinence. The Ugandan government, which once tackled the disease head-on with blunt advice on condoms and slogans like "zero grazing," has purged explicit images from AIDS-education materials. Illustrations depicting correct condom use have disappeared, supplanted by material on "ethics, morals and cultural values." ("For pupils, sex leads to great sadness," reads one snippet.) "Instead of understanding the disease as a public-health crisis," said Joseph Amon, the director of Health and Human Rights at Human Rights Watch, "it became understood as a test of moral character."
Prominent Ugandans have picked up this banner. The first lady, Janet Museveni, attempted to conduct a "virgin census" at the country's main university. One Ugandan parliamentarian proposed offering "chastity scholarships" to girls who could prove they had never had sex. Cultural notions of sex and morality are of course shaped by many forces; government policy is only one of them. Nonetheless, with more and more people living long lives with HIV, many from birth, a single-minded message of abstinence and morality seems not just counterproductive, but dangerous. Admitting that you carry a potentially deadly infectious disease and taking responsibility for containing it are hard enough; the near-certainty of censure by your friends and neighbors can make responsible action almost impossible.
It seems unrealistic to base policies on the expectation that asymptomatic HIV-positive youth will permanently abstain from sex, and foolish to drive them underground and away from the medication they've relied on since childhood. Today, the spread of resistant forms of the virus is still relatively rare in Africa, though it is said to be rising. And while resistance is limited, for the most part, to the most common anti retroviral regimens, the more expensive treatments available in other parts of the world are unaffordable to most Africans, so it's troubling to see the virus beginning to break through the first fire walls.
Before leaving Rose's home, I asked her how she was dealing with the rejection by those around her. "They can talk," she said. "It's up to them." The important thing was that she had learned her HIV-positive status and knew she had to take her drugs. "Tomorrow they could die," she said. "I will still be here. I know what I am, and I know what to do." In addition to infecting Peter and Beatrice, Rose had transmitted HIV to her youngest son. Half of her children carried the virus. As she spoke, Rose gazed at Beatrice's son, who was on a couch by the door, playing with Peter. For the baby, the prevention methods had worked. "Because I've tested myself and I've tested my children," Rose said, "I've managed to get a grandchild who is HIV-free," she said.
Rise in HIV infections in middle aged and older
One January day in 1991, career journalist Jane Fowler, then 55, opened a letter from a health insurance company informing her that her request for coverage had been denied due to a "significant blood abnormality."
This was the first inkling later confirmed in her doctor's office that the Kansas City, Kan., native had contracted HIV from someone she had dated five years before, a man she'd been friends with her entire adult life. She had begun seeing him two years after the end of her 24-year marriage.
Fowler, now 75 and healthy thanks to the advent of antiretroviral medications, recalls being devastated by her diagnosis.
"I went home that day and literally took to my bed. I thought, 'What's going to happen?'" she said. For the next four years Fowler, once an active and successful writer and editor, lived in what she called "semi-isolation," staying mostly in her apartment.
Then came the dawning realisation that her isolation wasn't helping anyone, least of all herself.
Fowler slowly began reaching out to experts and other older Americans to learn more about living with HIV in life's later decades. By 1995, she had helped co-found the National Association on HIV over 50. And through her program, HIV Wisdom for Older Women, Fowler today speaks to audiences nationwide on the challenges of living with the virus.
"I decided to speak out to put an old, wrinkled, white, heterosexual face to this disease," she said. "But my message isn't age-specific: We all need to understand that we can be at risk."
During a recent White House forum on HIV and ageing, at which Fowler spoke, experts presented new data suggesting that as the HIV/Aids epidemic enters its fourth decade those afflicted by it are aging, too.
Rise in HIV infections in middle aged and older
One report, conducted by the Aids Community Research Initiative of America (ACRIA), noted that 27% of Americans diagnosed with HIV are now aged 50 or older and by 2015 that percentage could double.
Why? According to Dr Michael Horberg, vice chair of the HIV Medicine Association, there's been a societal "perfect storm" that's led to more HIV infections among people in middle age or older.
"Certainly the rise of Viagra and similar drugs to treat erectile dysfunction, people are getting more sexually active because they are more able to do so," Horberg said. There's also the perception that HIV is now treatable with complex drug regimens, he said, even though these medicines often come with onerous side effects.
For her part, Fowler said that more and more aging Americans find themselves recently divorced (as she did) or widowed and back in the dating game.
And all too often, doctors fail to appreciate that their patients over 50 might still have active sex lives, so the possibility of sexually transmitted diseases is often overlooked.
Testing too late
"Often, they're tested [for HIV] too late," Fowler said. "Many have already been diagnosed with full-blown Aids. In fact, that's often how the diagnosis comes." At that point, it's much tougher for Aids drugs to do their job of suppressing HIV.
Aging with HIV presents other problems, as well. According to ACRIA's survey of about 1,000 HIV-positive men and women, 91% are battling other chronic medical conditions associated with age, including arthritis, neuropathies and high blood pressure.
Many are coping with these conditions on their own: 70% of older Americans with HIV live alone, the report found, more than twice the rate of their non-infected contemporaries.
Adding HIV and its often potent drug treatment to the usual troubles of aging can be tough. Speaking at the White House conference, Dr Amy Justice, principal investigator of the Veterans Aging Cohort Study, which involves more than 40,000 veterans with HIV, said: "There are a lot of [infected] people who are 60 or 65 or even 80 or 85.
These people feel older than their stated age and may have some of the same problems people 10 or 15 years older would normally experience."
Aging made worse by HIV/Aids
According to Horberg, many of the diseases of aging "are made worse by HIV or its treatment." For example, he said, the Aids drug tenofovir can impair kidney function, other antiretrovirals cannot be taken with cholesterol-lowering drugs such as Zocor or Mevacor, and it's suspected that HIV infection might even accelerate the onset of Alzheimer's disease.
Issues of HIV prevention and treatment can be especially tough on older women, said Diane Zablotsky, an associate professor of sociology at the University of North Carolina who's worked on the issue.
In terms of prevention, she noted that it may be tougher for a woman past menopause to negotiate condom use with a partner, when pregnancy is no longer an issue. And in terms of diagnosis and treatment, "if you have a woman experiencing night sweats and other kinds of symptoms is that menopausal change? A medication issue? Or is it an HIV-infection issue?"
All of the experts stressed that the key to curbing HIV infection in older Americans is the same as it is for the young; prevention. But that will mean having much franker discussions about sex.
"There's this myth that older people aren't sexually active," Fowler said. "Health-care providers could help by taking sexual histories, but they don't because they assume they don't have to. They can ask about smoking and alcohol use, but sex? Oh no, the person is old."
Zablotsky agreed. "The important thing is to reach out to older people in a way which, if in fact they are engaging in behavior that puts them at risk, they have a reason to say, 'I need to listen to this, I need to make this change, I need to protect myself.'"
Mixed emotions on World Aids Day
Soweto — Ntombi Zondi* of Pimville, Soweto, always gets mixed emotions on World Aids Day. Ten years ago to the day, Ntombi tested positive for HIV.
Ntombi, who is also a mother of two HIV negative children, is one of the millions of people throughout the country living with the virus.
Speaking to BuaNews at an event to mark World Aids Day, the 36-year-old says she would probably be dead if she was not taking anti-retroviral drugs.
"My decision to test for HIV had little to do with me being sick or suspecting that I have HIV. It was World Aids Day and I was curious to know my status," says Ntombi, whose red eyes are telling of emotion far deeper than words can express. She was 26 at the time and pregnant with her first child.
Reliving the day she was tested, Ntombi takes a long pause.
"I was in shock. All I could think about was how can this happen to me and why. I was in denial. I was still young and my future was bright."
Soon after testing positive, she started drinking almost everyday to hide the pain and the embarrassment.
"At that moment, I didn't care about the baby. But after a while, I started losing weight fast, then I start hearing about people around my age group dying of Aids and I started freaking out.
"I said to myself, I want to live as long as I can. I decided I'm not going to let this kill me. So I started going to the clinic," says Ntombi.
"I take my treatment (ARVs) everyday and I'm looking forward to a longer life. I'm 36-years-old now. It was 10 years ago when I [tested positive]. Look at me, I'm still here."
Ntombi says she also owes her longevity to the positive mind-set she adopted after attending counselling sessions and the support she got from friends and family.
"I told myself I am going to hold my head up high and do something positive about it."
She now juggles her part time jobs with that of being a counsellor for people living with HIV and Aids.
Apart from the training she got from a non-profit organisation dealing with HIV and Aids, Ntombi has no formal training but she says people feel at ease talking to her about their status.
"I let people know that they should not stop being what they want to be in life just because they are HIV positive. And I will continue to teach my peers about this until the stigma stops and until we find a cure."
Ntombi fiddles with the red ribbon pinned on her right breast pocket and before I can ask, she beats me to it and explains its symbolism.
"People often ask me why I wear this red ribbon. But I know that some are asking a hidden question: they wonder what experiences in my life have moved me so that I would want to wear a red ribbon everyday.
"My answer is always the same: I wear it because I can. I am still alive, still able to carry the message about the reality and urgency of Aids and how HIV can be prevented. I carry this message for those whose voices can no longer be heard, but whose presence can still be felt."
Although living with the virus was not easy, Ntombi says people should not see it as a death sentence but as an opportunity to create a better life.
I am moved by her passion and how easily she talks about her status. She says she decided to disclose her status in order to stop people from talking behind her back and to motivate others living with the virus.
It took Ntombi about six months to make her first disclosure. It was to her mother, who was disappointed at first.
"I did it because I wanted them to know the truth, that HIV is here and it doesn't matter how educated you are," she said, adding that she was also avoiding a scenario where people would gawk should her health take a turn for the worse.
At times, Ntombi admits that she gets depressed from thinking about her status. "Sometimes I feel I am not ready to die. My wish is to be with my family, especially my daughters, for years to come."
Asked if she has made peace with the father of her first child, who she claims infected her, Ntombi takes a deep breath and thinks before she answers.
"I was never mad at him for infecting me. I was mad at him for not wanting to talk to me afterwards but now I have made peace. I have a supporting family, boyfriend and friends who don't judge me."
I decided to look at the flip-side.
Nairobi — As one prepares to have the much dreaded HIV test, many seek comfort in the counsellor's common phrase: "HIV is not a death sentence". Paul Gwada took those words seriously.
"Although I was saddened to find out I had the virus, I decided to look at the flip-side. I quit school for lack of fees after my parents died yet I've learnt a lot and today I work for organisations which seemed beyond my dreams ," says a beaming Paul, an infectious smile on his face.
He had hopes of playing for the national football team, Harambee Stars, but had to settle for business -- selling used items, staging video shows and painting in his Kaloleni neighbourhood.
But after two years, he was in and out of hospital, suffering from pneumonia and recurrent tuberculosis, so his doctor suggested the HIV test. He took time to make up his mind. For a month Paul weighed his options and eventually went for it.
The positive result got thoughts of his child, wife and thriving business flooding through his mind. He sought solace from his aunt who, in turn, introduced him to a support group.
"Talking to my wife about getting tested was difficult. After she too tested positive, we knew there was no time for a blame game," Paul said.
"Knowing my HIV status helped propel my life. I have since gone back to class to study HIV management and today I am peer counsellor and nutrition advisor," he adds.
When he had the second test, he was found to have a CD4 count of 5.
CD4 cells are a type of white blood cells and a vital part of the immunity system. HIV highly affects these cells by reducing their number. The lower the CD4, the higher the chances of falling prey to opportunistic infections such as meningitis, pneumonia and tuberculosis.
Dr George Taitumu of the SOS Medical Centre says: "A low CD4 count means high viral load and vice versa. It is advisable to test for viral load but because of cost, most just test for the CD4 count to give an impression of the viral load.
"It is opportunistic diseases that end up causing HIV related deaths as a low count means the patient is severely immuno-suppressed."
The higher the number the stronger your immune system. People without HIV infection have about 700 to 1000 CD4 cells in a drop of blood the size of a pea. HIV infected people are considered to have "normal" CD4 counts if the number is above 500 CD4 cells in that same size drop of blood.
One warning: It is important to test the vital organs of the patient, particularly the liver and kidney.
Should they be compromised, it would not be advisable to take the ARV therapy as the toxicity of the drugs would only worsen the condition of the organs, Dr Taitumu says. But the ARV therapy boosts the CD4 cell count, in turn reducing the viral load.
As the world marks 22 years since the inception of World Aids Day, Paul looks back on the 10 years he has positively lived with HIV and looks forward to many more.
Osteoporosis, a disease that's most commonly seen in older women, but that's also associated with HIV
At the age of 56, Jules Levin felt pretty invincible, despite being HIV positive. He went to the gym regularly and controlled his disease well by taking his antiretroviral medicines every day.
Then he slipped one day while on vacation and broke his wrist. He underwent an operation to insert pins in his bones and needed to wear a cast for a month, keep his arm elevated, and then do physical therapy for two months to get to the point where he could lift a five pound weight. "It was one of the most difficult things I've ever been through in my life," he said. "I ran, biked, lifted weights and now all of a sudden I couldn't turn the page of a newspaper. It just really got to me."
After a few simple tests, the reason for Levin's fracture became clear: His bones were weak from osteoporosis, a disease that's most commonly seen in older women, but that's also associated with HIV.
"The giddiness of the age of HAART is over," said Levin, referring to highly active antiretroviral therapy, the life-saving drug regimen prescribed to people with HIV. "We should have an aging clinic in every hospital that's serving HIV patients."
Osteoporosis is one of many conditions associated with old age that is now being seen with increasing frequency in people with HIV. Research suggests that long-term exposure to the virus, and to the inflammation it triggers, make people vulnerable to premature aging and to a host of conditions seen with aging, heart and kidney disease, dementia, and osteoporosis.
Additionally, the overall population of people with HIV is getting older, thanks to improved medical therapy. At present, 1 in 4 people with HIV is age 50 or older. The U.S. Senate Special Committee on Aging has predicted that half of all adults with HIV will be older than 50 by the year 2015. Over the past few years, the National Institute of Health has increased its funding for research on HIV and aging, and the White House hosted a conference on October 27 on HIV and aging.
"The evidence is pretty clear," said Levin, who directs The National AIDS Treatment Advocacy Project (NATAP), a New York-based HIV education and advocacy group. "We're going to see early frailty, early senescence and people are going to start dying at earlier ages."
Compared to other conditions associated with HIV and aging, osteoporosis is relatively straightforward to forestall and treat. To maintain bone strength, it's important for all people with HIV to make sure they are consuming an adequate amount of calcium and Vitamin D. A recent article in the journal Clinical Infectious Diseases recommends 1,000 to 1,500 mg of calcium and 800 to 1,000 IUs of Vitamin D daily, as well as at least 30 minutes of weight-bearing exercise, such as jogging or walking, at least three days a week. Calcium is plentiful in dairy products and sardines, and is available in supplements such as calcium carbonate and calcium citrate. The National Institutes of Health has an online information sheet listing ways to get calcium. It's also important to avoid smoking and heavy alcohol use, since these can cause osteoporosis.
HIV is thought to be associated with osteoporosis for a variety of reasons. The infection, itself, causes inflammation, which in turn impacts the cells that maintain bones. Many conditions common in people with HIV, such as Vitamin D deficiency, being underweight and low testosterone, are associated with osteoporosis. Antiretroviral therapy and other medications frequently prescribed to people with HIV, such as Prednisone, also cause bone loss.
Even though many antiretrovirals can cause bone loss, osteoporosis is not a reason to stop taking them. "Antiretroviral therapy is life-saving, and we know that stopping antiretroviral therapy is not a good strategy for preventing complications," said Dr. Todd Brown, an endocrinology specialist at Johns Hopkins University who co-wrote the article in Clinical Infectious Diseases.
Brown and his coauthors recommend that all HIV-positive men older than age 50 and women who are past menopause undergo testing for osteoporosis, since it's a condition that usually doesn't cause symptoms until the person breaks a bone. His own research has found that osteoporosis is "alarmingly" prevalent among African Americans in inner city Baltimore. "Because of the perception that osteoporosis is a white disease, people of color get short shrift for screening," he said. "This concept that African Americans are protected shouldn't be a reason to neglect them."
Once someone is diagnosed with osteoporosis, it's important to take action to prevent falling, such as removing clutter and slippery rugs from the floor. Physical therapy can help improve strength and balance, which also reduce the risk of a fall. The person also should get his or her vision checked and review his or her medication list with a doctor to try to minimize any drug side effects or interactions that might cause drowsiness or unsteadiness.
A class of medicines called bisphosphonates can improve bone strength, but do have some rare risks. "While they do decrease the risk of fracture, they're not totally benign drugs," Brown said. "On the flip side, you shouldn't not use them in the patient who is at high risk of a fracture."
Levin urges all people with HIV to be assertive about discussing osteoporosis and other age-related conditions with their doctor. "My guess is that 90 percent of patients know nothing about any of this and a lot of clinicians and case managers don't know about it either," he said. "Every patient should ask their clinician, 'are you aware, are you monitoring me for heart disease, diabetes, bone disease, cognitive impairment, kidney disease?' This is an important issue for everybody."
Third of the top UK providers offer life policies to HIV positive people
Life insurers are ‘living in the dark ages’ and stigmatising HIV positive clients meaning their needs are not being met, according to research.
The survey conducted by intermediary Unusual Risks found that just a third of the top UK providers offer life policies to HIV positive people. And only two of the four who do so undertake a full pre-sales quotation procedure, meaning many people living with the disease are being asked to complete applications, submit to medicals and blood tests before any indication of the cost of insurance is offered. The adviser firm believes this is both non-competitive and unfair on applicants although it recognised that insurers have the right to decline applicants on medical grounds.
However, it felt that insurers were not dedicating enough attention to this developing market or taking the needs of HIV Positive people seriously enough. Chris Morgan, marketing manager of Unusual Risks, was shocked and concerned by some of the responses from the providers it contacted about HIV life assurance. "Only four responded yes, with some of the remaining companies even appearing shocked we had asked the question," he said. "Some of our findings and answers received from insurers regarding HIV life assurance are completely worrying.
It is apparent that the majority of companies are still living in the dark ages and attaching a stigma to HIV. "The survey established that either companies are avoiding the issue completely by not offering cover, or in the main offering completely inadequate, over-priced products and services to HIV positive applicants.' The four providers who originally said they would cover HIV positive clients, only two, Prudential and Zurich, accepted the test case put to them by the adviser.
Three years after transplant 88% of patients were still alive,
Kidney transplant is a feasible option for HIV-positive patients with end-stage renal disease, US investigators report in the November 18th edition of the New England Journal of Medicine.
Three years after transplant 88% of patients were still alive, and the transplanted kidney was still functioning in 78% of individuals. Overall, transplant did not complicate HIV disease management.
“Kidney transplantation is highly feasible in HIV-infected recipients,” comment the investigators.
End-stage renal disease is an important cause of illness in HIV-positive patients. Thanks to the success of antiretroviral therapy many HIV-positive patients with severe renal disease are considered good candidates for transplant.
Investigators wanted to see how safe and effective kidney transplant was in patients with HIV. They therefore conducted a multicentre, prospective study involving 150 patients who received a new kidney at 19 transplant centres across the US. The patients were followed for up to three years.
To be eligible for transplant, patients were required to have a CD4 cell count of at least 200 cells/mm3, and an undetectable viral load while taking antiretroviral therapy. Patients who were co-infected with hepatitis B or hepatitis C were only eligible for transplant if they showed no sign of cirrhosis.
The patients had a median age of 46, most (78%) were men, and 69% were black. Median CD4 cell count at the time of transplant was 524 cells/mm3. A total of 19% of patients were co-infected with hepatitis C and 3% were co-infected with hepatitis B.
Enrolment occurred between 2003 and 2009. The median duration of follow-up was 1.7 years, but 53 patients contributed three or more years of follow-up.
Survival rates were good. One year after transplant 95% of patients were alive and the graft had survived in 90%. After three years, 90% of individuals were still alive, and the transplanted kidney was still functioning in 74%.
These survival rates were slightly poorer than those seen in HIV-negative kidney transplant recipients, but were better than the rates observed in older transplant patients.
A total of eleven patients died. Three of the deaths were attributed to cardiac causes, two to sepsis, two to lung infections, two to cancer in the non-transplanted kidney, and two to unknown causes. The new kidney was still functioning in eight patients at the time of their death.
In addition, 13 patients lost their transplanted kidney. For five patients the cause was long-term rejection or chronic graft nephropathy, vascular thrombosis (three patients), acute rejection (three patients), technical reasons (one patient), and non-adherence to treatment (one patient).
Patients who received a kidney from a living donor were significantly less likely to lose their kidney than those whose donor was deceased (p = 0.02).
Antibody induction therapy with antithymocyte globulin was associated with an increased risk of graft rejection (p = 0.03).
A total of 49 patients experienced acute organ rejection. The incidence of rejection after one year was 31%, increasing to 41% after three years. Rejection responded to glucocorticoid therapy in 48% of patients.
Factors associated with an increased risk of rejection were receipt of a kidney from a deceased donor (p = 0.03), and use of the immunosuppressive drug cyclosporine (p = 0.02).
Patients whose donor was dead were more likely than those with a living donor to require dialysis during the first week after transplant (46% vs. 15%).
Episodes of organ rejection were associated with poorer kidney function after one and three years of follow-up (p = 0.05 and p = 0.01 respectively).
HIV disease progression
One year after transplant, patients who received antithymocyte globulin had significantly greater falls in their CD4 cell counts than individuals who did not receive this drug (-238 vs. -135 cells/mm3, p < 0.001). A difference was still apparent after three years (-57 vs. -52 cells/mm3, p = 0.05).
Viral load became detectable in 48 (32%) of patients at least once. Most of these increases in viral load were transient and one patient had a detectable viral load three years after transplant.
There were seven new AIDS-diagnoses.
Of the 150 transplant recipients, 57 had a total of 140 infections that required hospitalisation. Two-thirds of these were due to bacterial infections.
Patients co-infected with hepatitis C had a significantly higher rate of serious infecitons (p = 0.02). Infection rates were also significantly higher among patients treated with antithymocyte globulin (p = 0.002).
“The rates of patient survival and graft survival at 3 years were generally between the reported rates in the national database for older kidney-transplant recipients and for all kidney-transplant recipients,” comment the investigators.
They believe that these “favourable results were influenced by careful patient selection, adherence to clinical management protocols…and close coordination among the multidisciplinary teams.”
However, the investigators highlighted the difficulty of achieving “therapeutic and non-toxic levels of immunosuppressive drugs,” and they believe that this contributed to high rejection rates. The authors therefore caution: “antithymocyte globulin induction therapy should be restricted to patients at very high immunologic risk for rejection.”
My sexual health is mine to control, not his.
I am HIV positive, and I don’t blame anybody for it—not myself or anybody else.
He didn’t rape me and he did not trick me. It was through our unprotected sex that I became HIV positive. Since seroconverting, I have been very conscious of the language I use to discuss transmission, particularly my own. To say “he gave me HIV” obscures the truth, it was through a mutual act, consensual sex, that I became HIV positive. When speaking to him a couple months after my diagnosis I gathered that he knew he was positive when we had sex. But that is beside the point; my sexual health is mine to control, not his.
We are encouraged to think about prevention and transmission in terms of responsibility. Someone must be at fault. Culturally, we hunt for secret villains. Today’s “down low” black man is but the latest boogeyman at which we’ve pointed our fingers—the latest of the so-often racialized monsters at which we can direct HIV blame rather than have honest conversations about sex and relationships.
In recent weeks, another recurring villain has re-emerged: the HIV-positive criminal who callously infects others. Last month, long-standing accusations that baseball legend Roberto Alomar hid an alleged HIV infection from his wife and girlfriends returned to the news. This summer, German pop star Nadja Benaissa made international headlines as she was tried for failing to disclose her HIV status to sex partners. These stories rarely fail to steal the news spotlight, and often throw local communities into HIV panics.
There must be a reason they are so resonant, right? They are evidence that HIV transmission from knowingly positive persons is rampant, right? Wrong. The reality is that the vast majority of HIV infections occur between two consenting people who believe they are doing nothing more risky than making love—or, at least getting laid.
People who know their HIV status are actually more likely to use condoms than not. The Centers for Disease Control and Prevention reports one snapshot study that found 95 percent of those living with HIV infection in 2006 did not transmit the virus to others that year. Another CDC study, released in September, found that while one in five “men who have sex with men”—public health jargon for gay and bisexual men—in 21 major cities has HIV, nearly half of those men (44 percent) don’t know it. The agency estimates that the majority of new infections each year result from sexual contact in which the positive person does not know he or she has HIV.
HIV disproportionately affects African Americans, regardless of sexuality. They account for half of the people living with HIV/AIDS, but just 13 percent of the overall U.S. population. Studies also suggest African Americans are least likely to know their HIV status, with the younger being less aware. Similar patterns exist among men who have sex with men, of all races. No talking and no testing, just finger pointing.
The communication problems that help drive these trends don’t stop with finding monsters to blame. People I love and talk to about my status do not always have the language or tools to express their grief and worry. They ask things like, “How could you be so irresponsible?” Or, “How could you fuck up like this?”
This language hurts, but more importantly it shifts the discussion from meaningful conversation about risk and vulnerability to simplistic directives: if only people used condoms, transmission would cease. But this idea relies on a complicated array of misconceptions and idealistic assumptions of equality, equal access to information, and how to use that information to stay HIV negative.
It is irresponsible to just tell people to use condoms without acknowledging that conditions like poverty, patriarchy and homophobia play roles in the so-called risks we all take. Even with people who have seemingly escaped these broader contexts—say, a working-middle class white man such as myself—stigma can prevail. Stigma that is produced by homophobia and general ignorance, yes, but also by American society’s desperate need to discipline and punish, to affix blame on individuals rather than confront the systems in which individuals live. So the AIDS epidemic becomes a challenge of personal responsibility rather than a damning indictment of global public health. That personal responsibility, however, is tricky: I bore no responsibility for the epidemic, until I had HIV, when it became entirely my problem.
When I used to get tested at the city clinic, they would tell me that people stay negative by disclosing their negative status. Having a conversation is paramount—negotiating whether and how you want to use protection, talking about the last time you were tested and asking the same of your partner. This dialogue cannot be taken for granted, but for many, before these conversations can happen, we need the tools to do so. So here, we lead by example. Three people of varying HIV status offer their own testimonies on how they think about their sexual health, and what it means.
Age: 28; HIV negative
I can’t always say that I have cared much for my sexual health. I listened to the teachers speak about individual health but none of it seemed to do its purpose. I’m not so sure if I understood the power of owning my sexuality or knowing how to protect my physical and mental health. As I got older, I really started to look outside of what I deemed “me in between the sheets.” I started to think about my sexual health as more than just physical. I declared I own this body; I must respect it. When I do or do not have sex it is my decision, and I must be active in that decision, not passive. I appreciate sex. Through this process I have learned that communication about health awareness with my partners has improved over the years as well. Sex is one of the most natural things we can do as humans.
Catherine Mercedes Brillantes Judge
Age: 24; HIV negative
As a survivor of domestic violence and the many forms of abuse that it carries, I know being in control of your sexual health is critical for feeling empowered and safe. It took me years until I finally felt that I was in control of my sexual health and decisions. When I made the choice to be celibate (for a specific time period), it was the first time I felt in control of my body. It was liberating for me since I was often forced into sex throughout my adolescence. After not having the ability to say “no” for such a long time, I know the importance of making that decision. There are structural reasons why women feel that they are not able to say no, and we need to work to change that. As a young feminist of color, I believe it takes much more than reproductive health care and education for us to feel in control of our sexuality—it takes personal empowerment too. That to love and respect yourself means not only resisting coercion, but being comfortable enough to say yes when you want to have sex too.
Age: 31; HIV Positive
My relationship to HIV has been woefully simple and dramatically complex (with emphasis on the drama). When I tested positive, I knew it was not a death sentence. It was post 1996. I’d worked in prevention. I knew I was going to live. The problem became living and remaining a sexual being. As a youth organizer, I had been taught to integrate positive sexuality into youth work. I was taught, and believe, that sex is a natural part of our human experience and that we should teach and support each other in our explorations of sex and the ways in can enhance or relationships, friendships, and lives.With HIV I almost lost that…others tried to take it away from me. Now I talk about it raw and uncut. I talk about the challenges but also reclaim space in the sexual community and use my own experiences, the good, the bad, and the multi-orgasmic to demand permanent space for all those living with HIV. To all the poz people in the world, I say, with love: **** on.
“a well tolerated, feasible tool to treat HIV-related face lipoatrophy”,
Reconstructive surgery is “a well tolerated, feasible tool to treat HIV-related face lipoatrophy”, according to an international team of investigators writing in the online edition of AIDS. Danish, Italian and Spanish researchers came to this conclusion after reviewing studies examining the safety and effectiveness of various surgical options for the treatment of fat loss.
They found that treatments were generally safe, but that their effectiveness depended on the severity of the fat loss which an individual had experienced.
Disturbances in the processing and distribution of fat in patients taking HIV treatment were recognised soon after the introduction of potent, multi-drug antiretroviral therapy in the late 1990s. This syndrome of side-effects is called lipodystrophy.
Body fat changes in patients receiving HIV treatment can include the accumulation of fat around the trunk and at the back of the neck, and loss of fat from the buttocks, limbs and face. Fat loss is usually described as lipoatrophy. When it occurs in the face, fat is lost from the fat pads in the cheeks and the temples.
A number of causes for lipodystrophy have been proposed. However the biggest single cause of fat loss has been identified as treatment with d4T (stavudine, Zerit), and to a lesser extent AZT (zidovudine, Retrovir).
Neither of these drugs is now recommended for use in routine HIV care in resource-rich settings and modern anti-HIV drugs are thought to involve a low risk of lipodystrophy.
Slow restorations in body fat have been seen in patients who have switched from d4T or AZT to alternative anti-HIV drugs. However, facial fat loss usually remains extensive and drug therapies for body fat changes have proved elusive.
Facial fat loss can be highly stigmatising and confers an ill or aged appearance. Moreover, patients with facial atrophy have reported loss of self-esteem, poor overall quality of life and mental health problems such as depression.
Reconstructive surgery has become the mainstay of treatment for facial fat loss in patients with HIV.
The article’s authors wished to provide “an updated comprehensive knowledge of the surgical approaches for reconstruction of HIV-related facial lipoatrrophy”. They therefore conducted a literature search to identify studies reporting on the criteria used to select patients for surgery; the reconstructive options used; outcomes; and side-effects.
A total of 27 studies were identified, but only two of the studies compared alternative therapeutic options.
Two scales to assess facial lipoatrophy have been proposed. The first relies on photographic comparisons and the severity of patients’ fat loss is graded from 1 to 4. An alternative method of assessment used both photographic comparisons and CT scanning. Fat loss is then diagnosed as mild, moderate, or severe.
Surgical treatment of lipoatrophy can also be warranted because of its impact on emotional and psychological well-being.
An “Assessment of Body Change and Distress Questionnaire” has been developed and examines perceptions, attitudes, feelings, emotions, actions, and satisfaction related to appearance and body image. The investigators describe this as “an extremely useful tool.”
The perception of doctors and patients is the main criteria used to assess the success of reconstructive surgery for lipoatrophy. Ultrasound and CT scans have also been used. However, the investigators caution that “ultrasound evaluation of the cheek is a controversial end point.”
Three types of reconstructive surgery have been used: autologous fat transfer; biodegradable agents, for example polylactic acid; and non-biodegradable products.
All types of intervention can have short-term and chronic side-effects. They may also involve complications such as infections, or absorption or slippage of the filler.
The investigators note that “it is surprising how very few studies have assessed safety, efficacy and durability of these interventions, and only two partially randomized studies have compared different treatment approaches.”
The first of these studies was conducted in Italy. Patients were randomised into three arms and were treated with either fat transfer, or the biodegradable polylactic acid, or the non-biodegrable polyacrylamide hydrogel.
Fat thickness was comparable between the three treatment arms at the end of the study. However, individuals who received fat transfer reported poorer satisfaction with their appearance. In addition, a small number of patients who were treated using the fat transfer technique developed a “hamster” appearance.
These three products were examined in the second study which had a non-randomised design. On entry to the study, 50% of patients were assessed as having moderate or severe fat loss. This fell to 8% after the completion of treatment. Patient satisfaction and quality of life improved significantly in all three groups.
Choosing a treatment
The investigators stress that corrective procedures should only be performed by expert healthcare staff. In particular, only plastic reconstructive surgeons should be allowed to undertake procedures involving fat transfer.
Possible improvements in facial appearance should not be the only criteria guiding a choice between biodegradable and degradable products, state the authors.
They explain, “biodegradable agents offer a greater safety profile, having a lower incidence of adverse effects compared to nonreabsorbable products.”
However, the effects of polylactic acid and similar treatments are often short, meaning that patients require subsequent courses of therapy.
Nevertheless, the investigators believe that biodegradable fillers “should be first choice in younger people suffering mild to moderate facial lipoatrophy”.
But the cost and “policy reimbursements” are likely to be a factor in the choice of therapy.
Regardless of this, the investigators comment: “Patients must be informed about the options that suit their necessities, and participate to the decision of what material will be used in his or her case.”
They conclude that “plastic surgery seems to be a well tolerated, feasible tool to treat HIV-related face lipoatrophy”, and that the choice of therapy will depend on severity of the condition.
The authors add that new controlled studies are needed “to define the long-term benefits and safety of the different surgical techniques”.
Guaraldi G et al. Surgical correction of HIV-associated facial lipoatrophy. AIDS, online edition: DOI: 10.1097/QAD.0b013e32833f1463, 2010.
Mom of two, Cecelia Sitshaka, on living with HIV and taking charge.
Cecelia Sitshaka learned she was HIV-positive in 2002, married and pregnant with her second born. Since then she has saved her unborn child from the virus and salvaged a marriage that was on the rocks.
“The counsellor told me, ‘Cecelia, you are positive.’ I was so shocked. I closed my eyes and said, ‘tell me again.’ I can’t explain how I was feeling, I was angry at everything, I said to myself. ‘It is my husband that brought this to me.’ I am going to be sick and die, so will my baby. I was scared for my firstborn, he was still very young.”
Cecelia decided to rebuild her life. The first hurdle was to share the news with her husband, a task that required all her inner strength. The confidence that the virus demanded out of her, allowed her to shirk off the excruciating yoke of her husband’s physical, emotional and psychological abuse. “HIV saved my marriage,” she says.
The stigma associated with HIV in the lives of mothers such as Cecelia results in many HIV-positive mothers-to-be to fall through the cracks in the healthcare system. Medical interventions targeted at the prevention of mother-to-child transmission (PMTCT), often fail because HIV-positive women fail to access treatment. Through an HIV/AIDS and PMTCT education and support program, Cecelia’s second child was born free from HIV.
The estimated number of South Africans infected with the virus by year end 2005, was in the region of 5.5 million, according to the UNAIDS annual survey based on figures on the prevalence among women diagnosed at public antenatal clinics. Women account for more than half (58%) of adults living with HIV/AIDS.
For 33-year-old Cecelia, refusing to be a statistic was the beginning of a long journey of a thousand miles. She would not quit on her children, family and ill-informed community. “I have been involved actively in the community, I have become like a social worker. People come to me for advice, they have seen me on TV and have often disclosed to me.”
Through talks and outreach projects she has become an icon in her Khayelitsha community. In March 2006, Cecelia was a special guest of the then US First Lady, Laura Bush, at a function in the White House East Room. Cecelia was asked to address all of the distinguished guests and diplomats in attendance and for this she received a standing ovation.
The woman Cecelia is now certainly not the woman that was. She has overcome immense adversity, and leaves many humbled by her positive aura. Her marriage and family changed. She is a mother of two healthy babies, her husband has turned full-circle, even going as far as seeking advice from her on Anti-Retroviral Therapy (ARVs).
Now Cecelia’s sights are set on a tertiary course in training and development. She is happily married and continues to inspire those closest to her.
People living with HIV and AIDS are at an increased risk of developing serious mental disorders,
People living with HIV and AIDS are at an increased risk of developing serious mental disorders, according to mental health professionals at a Johannesburg meeting this week.
The meeting resolved that mental health interventions should be incorporated into existing AIDS services.
Studies from all over the world show that mental health disorders are growing fast among people infected with HIV compared to the general population. People with HIV have double the incidence of mental illnesses of HIV-negative people. Cluster Manager of the Non-Communicable Diseases Unit in the national Health Department, Professor Melvyn Freeman, was involved in a study that showed similar results in 2007.
“In the general population it was found that South Africa has 16.5% of people suffering from some form of mental disorder. When you come to people living with HIV, it went up to 43.7%. That’s a huge difference”, Prof Freeman said.
“When you look at the higher rates among HIV-infected people, you have to ask the question: Is this because they had a prior condition and their vulnerability led to their infection or is it that, because they have contracted HIV, it has mental impact on them, and, therefore, this raises the numbers of people living with HIV who have mental disorders. This is a complex issue and I would like to suggest that both are true… that it’s very, very likely that mental disorder is both a risk factor and a consequence of HIV”, he continued.
Quoting a study conducted among school-going youths in KwaZulu-Natal, Freeman supported the theory that having a mental disorder is a risk factor for contracting HIV.
“They looked, initially, at the relationship between knowledge of HIV and risk behaviour. This study was done by Dr Omar and Martin Prins, and others. Not surprisingly, from what we know, there was very little correlation between knowledge of HIV and risk behaviour. They also measured these youths’ depression and not surprisingly, in my view, they found that those who had higher levels of depression had higher risk behaviours. That makes sense to me because if you don’t really care about your life and your future, are you really going to take the protection that you should be taking? So, depression, then, for me, is a key risk factor for contracting HIV. Having a mental disorder – whether it’s a serious mental disorder or a more common mental disorder, such as depression - the risk factor is higher”.
Freeman also showed how a mental health disorder can be as a result of having HIV.
“We have to look at the other side. What does it feel like to actually be told that you have HIV? How do you cope with this? Who do you tell? Who don’t you tell? How are you going to be accepted? People living with HIV have informed me that this is a real, real difficult thing to handle and if you do not have support; and if you do not have help to get through this initial period and as you have to live longer with HIV, it does become a difficult thing to live with”.
Professor Rita Thom, a psychiatrist with more than 30 years experience, added that from a medical perspective, it’s not uncommon for people living with HIV to acquire a mental health condition. She said these mental health conditions can be divided into three groups.
“That is the HIV-associated neuro-psychiatric disorders. Those are the disorders that result from HIV brain infection; then you’ve got HIV and serious mental illness, which is quite complicated because it includes both some of the results of HIV brain infection as well as people who have a primary psychiatric disorder and then become HIV-infected; and, then, there is a very large group of people who have HIV and what we call common mental disorders, which are depression, anxiety, substance use disorders”, said Prof Thom.
Deputy Minister of Public Works, Hendrietta Bogopane-Zulu, attended the meeting. She expressed concern that it has taken the mental health service provider community too long to articulate themselves on the issue even when the inextricable link between mental health illness and HIV was evident for many years.
“Those in the forefront of mental health have actually not rolled up their sleeves and taken up the fight. Three weeks ago I’ve gone to three funerals of women with mental disabilities in the former Transkei. They are dying. And they are dying because all of us in this room, operating in this field, we have actually not invested enough time. And a lot of people with mental illness that are supposed to be on ARVs are not on ARVs”, she said.
As the current National Strategic Plan on HIV and AIDS is coming to an end, mental health professionals resolved that they need to organise themselves to lobby for the recognition of mental health and HIV and AIDS as co-morbidities whose treatment approaches must be integrated in the next National Strategic Plan.
In HIV-negative individuals, median levels of influenza-specific IgM and IgG increased significantly after the receipt of the vaccine.
HIV-positive patients with a CD4 cell count below 350 cells/mm3 have an impaired immune response to the seasonal influenza (flu) vaccine, Swiss investigators report in the September 10th edition of AIDS. They recommend that all HIV-positive patients should have an annual influenza vaccine to help them to establish flu-specific memory immune cells, the formation of which can be difficult after the immune system suffers serious damage.
The study was undertaken because investigators from Basel wished to assess responses to the seasonal influenza vaccine in HIV-positive patients. Blood samples were therefore taken from 24 HIV-positive patients and 31 HIV-negative controls immediately before administration of the seasonal flu vaccine in 2007-2008 and again approximately 30 days later. The production of two forms of influenza antibodies – IgM and IgG – and levels of flu-specific CD4 cells were measured.
All the HIV-positive patients had been taking antiretroviral therapy for at least three months and had a viral load below 200 copies/ml.
In HIV-negative individuals, median levels of influenza-specific IgM and IgG increased significantly after the receipt of the vaccine. In addition, increases in influenza-specific CD4 cell counts were observed in 92% of individuals.
Amongst HIV-positive patients with well-preserved immunity (a CD4 cell count above 350 cells/mm3), the administration of the vaccine lead to significant increases in levels of flu-specific IgM and IgG. However, only 64% of patients had an increase in their flu-specific CD4 cell count.
A poor response to the vaccine was seen in the HIV-positive patients whose CD4 cell count was below 350 cells/mm3. No significant increase in influenza-specific IgM antibody levels were seen, and only two patients had any IgM response at all. Moreover, only 44% of patients had an increase in their influenza-specific CD4 cell count. However, a significant increase in levels of post-vaccination influenza-specific IgG was observed.
“Increasing levels of IgG in this study group most likely reflects a memory response”, comment the investigators. They believe that this finding is important and “provides an immunologic rationale supporting the recommendation of annual influenza vaccinations throughout the course of HIV infection.”
Such vaccinations when a patient’s immune system is intact build up “broad and long-lasting” B-cell memory.
The importance of such memory cells was shown in the recent H1N1 pandemic. Children were especially vulnerable to this strain of flu because they lacked the protective antibodies that are developed from contact with earlier strains of flu.
“These preliminary data should trigger future research aiming to understand the molecular basis of the observed lack of IgM-production”, recommend the investigators.
The findings of the study also have significance for clinical practice as they “lend support to strictly enacting annual influenza-vaccination in all HIV-infected individuals regardless of their CD4+ T-cell count.”
These findings, which broadly correspond with findings from a sample of US patients showing that lack of response to H1N1 vaccine was associated with a low CD4 count, suggest that people with HIV with higher CD4 counts may derive the greatest benefit from current influenza vaccines, and that more research is needed to determine how to improve influenza vaccine responses in people with low CD4 counts.
In parrticular, argue the authors of a recent editorial comment in the journal AIDS, ensuring annual influenza vaccination in people with higher CD4 counts is likely to promote the build-up of B-cell memory while immunological competence is still maintained, ensuring that any subsequent CD4 cell decline does not impair responses to future influenza vaccinations.
"I have two children who are HIV-negative and a partner that is HIV-negative"
Johannesburg - Journalist and long-time HIV activist Pholokgolo Ramothwala, 32, was diagnosed HIV-positive at the age of 19. He runs his own communications company and writes an online diary about living with HIV. He spoke to IRIN/PlusNews about love, disclosure and discordance.
"I get hundreds of letters from people – the most frequent questions [they have] are about relationships and HIV disclosure.
"Delaying disclosure has got its own implications, because you fall in love with this person and it becomes more and more difficult to tell [them]. The one advice I have, that I always tell people, is that you can never hide HIV forever.
"Somewhere [along the way], your partner is going to want a child, or you are going to get sick, or have to start taking ARVs [antiretrovirals]; somewhere, something is going to happen that is going to make this person start wondering.
"From the first time I meet you, I'll tell you I have HIV – take it or leave it. I have a friend who called me last night to tell me that he broke up with somebody because she didn't want to accept that he's got HIV.
"I said, 'You know what? Move on. There's a lot more people out there that are accepting of HIV.' [In] South Africa there's almost six million people that are living with HIV ... [but] we behave like [that's not the case].
"Most people who are HIV-negative have a risk appetite for HIV – [in other words] because I don't look like I have HIV, people are willing to sleep with me.
"It might be uncomfortable, but it's the truth, and you have to talk to couples about that. We can talk about multiple concurrent partnerships, but there are people in stable relationships that are getting infected because they just didn't think about testing for HIV.
"I have two children who are HIV-negative and a partner that is HIV-negative, and it all happened because of the knowledge that I had [about HIV]. It sounds like a complicated science but it's not.
"I live with HIV every day in my house, I know what I need to do to protect my partner, I know how important it is to use a condom. I know what it is that I shouldn't do sexually, because for the past 12 years I've gained experience of what works and what doesn't.
"But the one challenge I always had was having to find that information. If I was not a journalist by profession, maybe I would never have known all these things."
Mortality due to AIDS fell, but mortality due to non-AIDS-related diseases, such as lung cancer, increased.
Lifestyle and social factors need to be addressed if the full potential of HIV treatment to lower mortality is to be realised, according to results from a large cohort study published in the May 15th edition of Clinical Infectious Diseases.
Diseases associated with ageing but nevertheless influenced by HIV infection, and risk behaviours associated with HIV infection, such as cardiovascular disease, non-AIDS-defining cancers, kidney disease and liver disease, are the causes of death in a growing proportion of people with HIV, while deaths from AIDS-defining causes such as opportunistic infections and AIDS-defining cancers have fallen over the past ten years.
Investigators from the international Antiretroviral Therapy Cohort Collaboration examined recorded causes of death amongst patients taking HIV treatment in Europe and North America between 1996 and 2006. Mortality due to AIDS fell, but mortality due to non-AIDS-related diseases, such as lung cancer, increased.
Their retrospective analysis included 13 studies, which included a total of 39,272 patients.
These individuals contributed a total of 154,667 person-years of follow-up, the median duration of follow-up for each patients being a little under four years.
At the time HIV treatment was started, the patients had a median age of 37 years. The median calendar month when antiretroviral therapy was initiated was December 2000. The majority of patients (62%) took a combination that included a protease inhibitor.
There were a total of 1876 deaths (5%). The overall mortality rate was 12 deaths per 1000 person-years. Those who died had a lower median CD4 cell count at baseline (110 cells/mm3) than those who survived (217 cells/mm3).
A cause of death was recorded for 1597 patients. Almost half (49.6%) were due to AIDS. When the investigators looked at the AIDS-related mortality in further detail, they noted that 23% of all deaths were due to AIDS-defining infections and 15% to AIDS-defining cancers.
Non-AIDS-defining cancers were the next most common cause of death (12%). Over a third (37%) of non-AIDS-defining cancer deaths were caused by lung cancer.
Infections not considered AIDS-defining caused 8% of all deaths, and 8% of deaths were also attributed to cardiovascular death. Violence accounted for 8% of deaths, liver disease for 7%, respiratory diseases for 2% and renal failure for 2% of mortality.
The cause of death changed over time. The proportion of AIDS-related deaths fell from 58% in 1996-99 to 44% in the period 2003 to 2006. The percentage of deaths due to AIDS-defining cancers fell from 21% in the earlier period to 13% after 2003.
However, at the same time non-AIDS-defining cancers became an increasingly important cause of death. The proportion of deaths attributed to such malignancies more than doubled from 7% before 1999 to 15% in the period between 2003 and 2006.
A low CD4 cell count was associated with an increased risk of death from non-AIDS-related cancers (HR per 100 cell/mm3 fall = 1.43; 95% CI, 1.34 to 1.53)and renal cancers (HR per 100 cell/mm3 fall = 1.73; 95% CI, 1.18 to 2.55).
“The strong inverse association of rates of death due to AIDS with CD4 cell counts at the time of starting antiretroviral therapy supports arguments for earlier initiation of antiretroviral therapy,” comment the investigators.
A baseline viral load above 5 log10/copies/ml was significantly associated with an increased risk of death due to AIDS (HR = 1.31; 95% CI, 1.12 to 1.53), infections (HR = 1.85; 95% CI, 1.25 to 2.73), cardiovascular disease (HR = 1.54; 95% CI, 1.05 to 2.27), and respiratory disorders (HR = 3.63; 95% CI, 1.30 to 10.09).
“Systematic immune activation secondary to high viral replication, rather than additional or additional to immunodeficiency, may promote death from infections and cardiovascular disease,” write the study’s authors.
Mortality rates for all causes with the exception of renal disease were higher for injecting drug users than other risk groups. Especially strong associations between injecting drug use and death due to liver disease, respiratory illnesses, violence and infections were observed.
Older age was strongly associated with an increased risk of death from non-AIDS-related cancers (HR per 10 years = 2.32; 95% CI, 2.04 to 2.63), and cardiovascular disease (HR per 10 years = 2.05; 95% CI, 1.76 to 2.39). The rate of kidney-related death was especially high amongst patients aged over 60.
The investigators believe that these results “imply that the process of aging will become a dominant factor in HIV mortality in the next decade.”
Overall, mortality rates were 16% were lower in women in men. In addition, women were 50% less likely than men to die of non-AIDS-related cancers.
As the duration of antiretroviral therapy increased, the risk of death from AIDS, non-AIDS-related infections, and kidney disease decreased (p < 0.001).
Starting HIV therapy after 2000 was associated with a significant reduction in the risk of death due to AIDS (p < 0.001).
“Antiretroviral therapy continues to dramatically reduce rates of mortality attributable to HIV infection in high-income countries,” conclude the investigators.
However, they express concern about the high mortality rates due to conditions “associated with social and lifestyle factors…the importance of lifestyle is reinforced by the observation that the most common non-AIDS malignancy was lung cancer, likely caused by smoking.”
The investigators believe that these findings have implications for the care of patients with HIV. They suggest: “interventions to address risk factors for lifestyle-related causes of death, as well as monitoring for and care of diseases associated with old age, will be necessary if the full benefit of antiretroviral therapy in decreasing mortality is to continue n the second decade of antiretroviral treatment.”
The Antiretroviral Therapy Cohort Collaboration. Causes of death in HIV-1-infected patients treated with antiretroviral therapy, 1996-2006: collaborative analysis of 13 HIV cohort studies. Clin Infect Dis 50: 1387-96, 201
“I think I would be dead by now had I not started treatment,”
When a tall and scrawny Bongani Masalaza (37) of Khayelitsha was diagnosed with HIV in 1997 there was no antiretroviral (ARV) treatment available and he would battle to survive for 11 long years before he finally accessed the life prolonging drugs.
“I lost a lot of weight and couldn’t do anything for myself. My father who was a pensioner would wash me because I was too weak to do so myself. That time my understanding was that if you had HIV it meant you had AIDS. You would surely die,” said Msalaza..
Before his diagnosis Masalaza was not eating well and had heavy diarrhoea – he weighed 33kg.
“Even my feet were painful all the time. I could see that there was something wrong with me. So I went to the clinic where I tested positive for HIV,” he said.
However, a few months after his diagnosis, an unemployed Masalaza said he went back to the clinic where he was told he had Tuberculosis. He took his TB treatment for six months. He also recalls being put on Vitamin B complex and Bactrim in 2007. But he was still ill.
“I continued to get sick. I went to the clinic again to find out what was happening. After running some tests the nurses told me that I had TB again. This worried me because it was the second time I was getting TB. This time I was told that I would have to take treatment for eight months,” he said.
He said his CD4 count was 120 and he was weak. In January 2008 he was put on ARV treatment because the nurses saw that “I was too sick not to start treatment”.
“When I started the treatment it was difficult to take my pills. I always felt queasy after taking treatment. I then insisted that my sisters crush some of the pills into powder, especially efavirenz (one of the ARVs), before I could take it because it was too big. There were times when I felt I wanted to give up on treatment, but I would think of my health. I knew there was nothing else that could help me,” he said.
Now thriving with a CD4 count above 500 and weighing 62kg, Masalaza urges all patients on treatment “to stick to their treatment” even if it is at times tough due to side effects.
“I think I would be dead by now had I not started treatment,” he said
The needs of adolescents living with HIV are much more sensitive and varied than those of adults
As the number of young people living with HIV increases internationally, new and innovative ways to talk about sex, disclosure, and health need to be developed for HIV-positive adolescents.
According to a panel presenting at the Eighteenth International AIDS Conference in Vienna, the needs of adolescents living with HIV are much more sensitive and varied than those of adults, as they must simultaneously deal with 'adult' issues like disclosure, practicing safe sex, and adhering to treatment, while also addressing issues traditionally associated with adolescence, such as body image, first sexual experience, peer pressure and forming personal identity.
Jasna Loos of the Institute of Tropical Medicine in Belgium presented the findings of a formative needs assessment conducted amongst HIV-positive young people in Kenya and Uganda. Considering the categories of body image, sexual identity, increased importance to peers, envisioning the future, and independence – all central themes within adolescent development – Loos noted that HIV-positive young people concurrently felt empowered and excited about growing older, while also being weary of the potential restrictions and increased responsibility resulting from their HIV status.
With regards to body image, respondents felt that puberty and growth offered a new start and chance to transform from a social outsider to that of a social insider, as those previously sickly in appearance and smaller than their peers grew into healthy adults. Peer influence was central to understanding sexuality, sexual norms and identity, with positive adolescents attempting to mirror so-called 'normal' behaviour. Due to notions of AIDS as a deadly virus, Loos notes that many adolescents “lived in the moment” and wanted to get “the most out of a life with HIV”. In reality, this often resulted in early first sexual experience, as young people “did not want to die without having sex”.
Loos notes that, as yet, there are few evidence-based interventions to help positive adolescents in coping with such issues. Based on the findings of the study, she suggests that sexual and reproductive health be fully integrated with HIV services, specifically by building upon existing resources; that providers focus on a holistic approach and do not rely on 'one-size-fits-all' programmes; and that service providers focus on building trust with adolescents.
Sabrina Bakeera-Kitaka from Kampala’s Mulago Hospital discussed adolescents’ experiences in disclosing status to their peers, friends and family. A study conducted at Mulago assessed the experiences of ten men and ten women who were taking ART, and followed them through the process of disclosure. Partner disclosure proved to be most challenging for the participants, who cited fear of rejection, and loss of respect and care, if their status became known. Participants also said that they did not want to disclose to their family members in order to protect them from “distressing information”. Generally, however, disclosure proved to be a “pivotal step in their lives”, often resulting in positive life changes including increased care and support, both financial and emotional.
In addition to psychosocial and behavioural concerns, a recent conducted at the Family Care Center at Harlem Hospital in New York City looked at the effects that the virus has on neurocognitive functions among HIV-positive adolescents living in a poor, urban area. While several other studies have focused on neurocognitive and behavioural effects from viral infection, questions have arisen as to whether these effects stem from HIV and opportunistic infections specifically or, rather, are a result of social factors affecting those most affected by the virus – such as poverty, poor education, and single-parent households. Affected neurocognitive functions include fine motor strength, language, executive skills and memory, academic achievement, and general cognitive ability.
The Harlem study attempted to consider the “neighborhood question” by assessing neuropsychological test results, ART regimen, CD4 count and demographic information amongst adolescent patients. While all study participants displayed some sort of learning or behavioural disorder, the study found that “environmental influences on neurocognitive functioning may be negligible given the impact of advanced HIV infection and psychiatric illness.” As such, high rates of psychiatric illness among HIV-positive adolescents require increased prevention and intervention strategies.
Interestingly, panelists noted that differing experiences for adolescents generally depended on whether an individual was infected through neonatal or postnatal exposure. However, this is currently an anecdotal observation, and requires further exploration before conclusions can be made.
Treatment adherence also poses a significant challenge for adolescents living with the virus, regardless of how they became infected. Ana-Maria Schweitzer of the Baylor College of Medicine, highlighting her work in Romania, noted that 60% of adolescents will struggle with adherence at some point. In her study, adherence was affected by misconceptions surrounding the need for good adherence, as well as by fears of unwanted disclosure and frustrations stemming from a sense of limited freedom associated with a treatment regimen.
Of central concern to young people living with HIV is the question of transition in treatment throughout the adolescent years. Bakeera-Kitaka’s Mulago Hospital currently houses a 'transition clinic', which attempts to facilitate patients’ movement from child to adult care. This programme has seen the majority of patients successfully making the transition from one to the other. However, more research and discussion is needed to understand best practices in this regard.
Discordant couples are increasingly common in African countries with high prevalence
VIENNA, 20 July 2010 (PlusNews) - Discordant couples, in which one partner is HIV-positive and the other HIV-negative, are increasingly common in African countries with high prevalence, but there is often little support to help them navigate the complexities that the virus adds to a relationship.
"The research and programming ... has largely had a biomedical focus. There is a black hole of information when it comes to the psycho-social aspects of HIV discordance," Kevin Moody, international coordinator of the Global Network of People living with HIV (GNP+), said at the International AIDS Conference in Vienna, Austria.
A 2008 study by GNP+ among discordant straight and gay couples in South Africa, Tanzania and the Ukraine found that they dealt with a raft of issues, from achieving intimacy to disclosure and dealing with discrimination.
"HIV-positive people are living longer, are healthier and are remaining sexually active," said Monique Tondoi, a social economist at Women Fighting AIDS in Kenya (WOFAK), who has been married for 20 years and living with HIV for 16.
"We need to know what choices are out there for HIV prevention, whether we can have children ... how to talk to our families about the diagnosis. You don't want to infect your partner, but you still want the intimacy, the love that comes with sex, so you need to know how to go about it."
The reproduction conundrum
Tondoi said that societal pressure on African women to have children was a particular concern.
Discordant couples are usually advised to use condoms to prevent HIV infection. Those wanting to conceive are sometimes encouraged to use assisted reproductive methods such as in-vitro fertilization (IVF), which are often prohibitively expensive. In many cases, couples are not given enough information to make an informed decision.
Research suggests that antiretroviral (ARV) therapy can lower viral load (the amount of virus in the blood) to undetectable levels, so discordant couples can have unprotected sex during the fertile days of a woman's cycle with very low risk of the HIV-negative partner becoming infected.
However, until more data is available to back up such findings, said Moody, "We prefer to err on the side of caution and advise correct and consistent condom use.”
Other options for HIV prevention among discordant couples are non-penetrative sex and abstinence, but African women rarely have a say as to when they will have sex, and are often coerced into having unprotected sex that could put them or their partner at risk.
"I consider myself to be an empowered woman, but even I have to fight with my husband about using a condom - he hates it," Tondoi said. "So imagine a woman in the village; how is she to protect herself, or protect him?"
"Some of the reasons couples who are aware of their discordance might have unprotected sex are logistics, such as obtaining and ensuring you have a condom nearby," said Kristin Dunkle, lead author of a study on HIV transmission in marriage in Rwanda and Zambia, which recommends promoting voluntary counselling and testing for discordant couples.
After counselling, women in the study were able to strategically position condoms around the house so that if their husbands returned home drunk, they were quickly able to reach for one and use it.
Another study suggested that couples counselling would be particularly important as new treatment options had the potential to decrease concerns about HIV transmission.
Tondoi noted that there was a need for HIV-prevention awareness among discordant couples, and for policies, services and research geared to their situation.
"These days it's a long time between an HIV-positive test and getting to the AIDS stage of infection," said Major Rubaramira Ruranga, an HIV-positive AIDS activist from Uganda. "We need options; we need research and education to get through life."
The world will face a mighty social and medical challenge as millions of people with HIV survive into old age
The world will face a mighty social and medical challenge as millions of people with HIV survive into old age, the world Aids forum has heard.
The problem is only now becoming apparent as the first generation living with the human immunodeficiency syndrome (HIV) head towards their 60th birthday and beyond, thanks to the lifeline of antiretroviral drugs, say specialists.
These survivors are mainly in western nations, where the precious therapy first became available from 1996.
But they will soon be followed by millions of counterparts in sub-Saharan Africa and other poor countries where the drug rollout started in the middle of the last decade.
Testimony to antiretrovirals
That these men and women should have stayed the course is itself a stunning testimony to antiretrovirals - and, say some of the survivors themselves, something of a miracle.
"We lived from day to day," Jean-Luc Romero, 51, a councillor for the Paris region, told AFP, as he recalled the situation in 1987, when he learned of his HIV status.
"There was no point planning beyond that. We saw people dying all around us, and we would say, 'That will be us one day.' We didn't think about the future, because the present was all we had. I remember thinking, 'I won't live beyond 30'."
People died within a decade
AIDS first came to light in 1981. Before antiretroviral treatment developed, people usually progressed to the disease within a decade after infection by HIV, and died a year or two afterward.
For many of those now advancing into old age, living with HIV will be fraught with medical problems, loneliness and stigma and worries about finance, a seminar at the 18th International Aids conference heard on Wednesday.
"There have always been older people with HIV, but what is new is the numbers, that will require new public health thinking compared to the past," said Gottfried Hirnschall, director of HIV/Aids at the UN's World Health Organisation (WHO).
"We have to discuss this subject," he said. "Ageing with HIV is not just a clinical challenge, it is a clinical and a social challenge, and it's not just confined to one part of the world versus another."
Lisa Power, policy director with the British Aids charity the Terrence Higgins Trust, said that even though people with HIV were living longer, their quality of life was often darkly overshadowed by worry.
Her organisation carried out a questionnaire of 410 people with HIV aged more than 50 living in Britain, which was then followed up with 40 in-depth interviews.
The respondents were likelier to be unemployed than healthy counterparts and had meagre savings, often because they had expected to die before they got old and so had never put money to one side.
Many were socially isolated, fearful of the double discrimination against old age and Aids, and fretted about the day when they ultimately would be admitted to hospital or a nursing home.
Research presented by Margaret Hoffman-Terry of the American Academy of HIV Medicine provided statistic evidence of the scale of the problem.
In the United States alone, fewer than 20,000 people with HIV in 1995 were older than 50. In 2005, this figure was 120,000. In the 55-plus group, Americans with HIV were three times likelier than a healthy man aged 70 to have a chronic health problem, she said.
The complications of HIV - and the side-effects of powerful antiretrovirals that have to be taken each day for the rest of one's life - breed a long list of sicknesses.
They include depression, hypertension, diabetes, lipodistrophy (a redistribution of fat around the body), metabolic disorders, osteoporosis, heart, liver and kidney disease and cancer.
"In the future we are going to see patients living decades, and we are going to have to figure out ways of getting them to a healthy old age," said Hoffman-Terry. - (Richard Ingham/Sapa/AFP, July 2010)
Data Addressing Barriers to Accessing HIV Testing, Care, and Treatment in the United States Presented at International AIDS Conference
VIENNA, Austria--(BUSINESS WIRE)--Bristol-Myers Squibb Company (NYSE: BMY) today presented results from a national survey which found that emotional barriers, such as stigma, fear, denial and shame, and structural barriers, such as lack of knowledge, transportation, and insurance coverage, can prevent people living with HIV/AIDS (PLWHA) from seeking care and treatment. These data further the understanding of obstacles to care for many PLWHA and may help address the gap between a person testing HIV positive and seeking medical care and treatment in the United States. The national survey, commissioned by Bristol-Myers Squibb, was presented at the 18th International AIDS Conference in Vienna, Austria.
According to the national survey results, emotional barriers are the key barriers across all three patient groups surveyed from both the patient and the health care provider (HCP)/allied health care provider (AHP) perspective. Patients surveyed included those who were diagnosed with HIV and under care (DUC), diagnosed and not under care (DNUC), or undiagnosed and at risk for HIV (AR). These emotional and structural barriers are:
HCPs were found to underestimate the impact of emotional rather than structural barriers on a patient’s willingness to undergo HIV testing, access care, and even initiate HIV treatment when medically appropriate. Patients who were DUC were more likely to rate their doctor as influential in treatment decisions than patients in the other two groups surveyed. Understanding these barriers and how they differ across patient groups and HCPs throughout the country may provide key insights in helping to increase the number of people who receive the care they need.
“Despite the widespread availability of HIV therapies and expert care in the United States, many patients seek treatment long after HIV treatment experts would recommend initiating therapy. We hope that by understanding the perceived barriers to HIV care for both health care providers and patients, we can help address these treatment gaps,” said Daniel Seekins, MD, group director, HIV medical strategy, Bristol-Myers Squibb and one of the authors of the study. “This research underscores Bristol-Myers Squibb’s long standing commitment to the HIV/AIDS community and is part of our continued quest to ensure people living with HIV and AIDS receive optimal treatment.”
Recognizing the challenges that prevent people from accessing care, the National AIDS Fund (NAF) and Bristol-Myers Squibb entered into an unprecedented collaboration in 2009, combining financial resources and technical expertise to reach HIV-affected communities and to help facilitate changes to enhance access to care for PLWHA. This collaboration is one of the key components of Positive Charge, a Bristol-Myers Squibb initiative launched in December 2009 to help break down the barriers that prevent PLWHA from receiving HIV care, appropriate treatment and necessary support.
Positive Charge aligns with President Obama’s National HIV/AIDS Strategy (NHAS) announced July 13, 2010. Developed with insights and input from the HIV community, the NHAS focuses on three main goals – lowering the rate of HIV infections, increasing the number of people in care, and reducing disparities in care. In May 2010, Bristol-Myers Squibb and NAF joined Melody Barnes, Director of Domestic Policy Council, for a panel discussion at the White House, during which Positive Charge was discussed as an example of the public-private partnerships necessary for the successful implementation of the NHAS. At that time, NAF announced the awarding of five major grants to organizations in areas of high HIV prevalence that will enable more than 35 community-based organizations to help improve access to care for PLWHA. These grants provide an opportunity for geographically and culturally diverse organizations within a region to combine their expertise in developing community-driven solutions to help enable greater access to HIV/AIDS care and treatment.
About the National Survey
The findings are the result of a national survey of patients and health care providers (HCPs). Bristol-Myers Squibb commissioned a quantitative national survey of patients and health care providers, including patients who were diagnosed with HIV and under care (DUC), diagnosed and not under care (DNUC), or undiagnosed and at risk for HIV (AR), and health care providers including physicians, nurse practitioners/physician assistants (NPs/PAs) and allied health care providers (AHPs) such as case managers, peer educators/counselors or mental health professionals/social workers.
Two parallel surveys were conducted among 234 patients [104 DUC; 54 DNUC, 76 at-risk (AR)] and 299 HCPs and allied health professionals (90 MDs, 40 NPs, 33 PAs, 136 AHPs) during November 2008 through January 2009. Interviews were conducted over the phone, online or in person and lasted approximately 30-45 minutes.
According to the national survey data presented, HCPs were more likely to view substance abuse issues (49% for patients DUC and 66% for patients DNUC) or struggling to handle financial and basic needs (58% for patients DUC and 64% for patients DNUC) as reasons why people living with HIV were not receiving treatment. On the other hand, patients DUC indicated that fear of side effects (82%), denial of needing treatment because they did not feel sick (69%), and HIV stigma (55%) as key barriers. Findings were similar for patients who were diagnosed but not under care.
About Positive Charge
Positive Charge is a comprehensive U.S.-based initiative sponsored by Bristol-Myers Squibb and built on three key pillars: enabling PLWHA to access care and treatment, contributing to the scientific agenda, and demonstrating advocacy leadership.
Positive Charge is designed to support programs customized to help meet the unique needs of individuals living with HIV, and is dedicated to working with health care providers, community members, advocates, caregivers and families of PLWHA in order to help assist them in overcoming the barriers that may be preventing them from getting the HIV care, treatment and support they need.
Positive Charge is also designed to make meaningful contributions to scientific exchange on issues of importance to HIV patients and physicians and to advocacy dialogues at the state and local levels to the benefit of PLWHA.
To learn more about Positive Charge, please visit HERE
"Playing football helps me a lot, it relieves stress and we share our problems as a team."
Harare - Taking a breather after a heavy training session, Elizabeth Maseswa recalls how she was kicked out of her Harare home for revealing her HIV status before finding a new family on the football field.
"Five years ago, my own mother disowned me and ordered me out of the house. I had no one to turn to before I joined the team," said 26-year-old Maseswa, the skipper of the table-topping ARV Swallows.
"Playing football helps me a lot, it relieves stress and we share our problems as a team."
The ARV (antiretroviral drugs) Swallows are one of 16 teams all made up HIV-positive women formed by veteran football administrator Chris Sambo.
Other teams include Stigma Eradicated and Virus Ambassadors, whose players have forged a family-like bond which should be the envy of some of the teams who have exited the World Cup in neighbouring South Africa.
In a country which is not only in the eye of the Aids pandemic's storm but also suffered severe food shortages during a prolonged economic crisis, such solidarity and companionship is vital.
"Sometimes I have lacked even basics like salt, but once I tell my teammates they help me out and also get me things I haven't even mentioned," said Maseswa. "We share each other's burdens."
Apart from the camaraderie, players say the football had made them fitter.
"I now feel like (former Zimbabwe footballer) Peter Ndlovu," said Maseswa's 29-year-old teammate Deliwe Murwira.
"My sister-in-law used to sing about my HIV status saying all sorts of insults, but all that has changed when I started playing football.
"Some people did not want to share a bottle of water with me, I could not walk here without fingers being pointed at me, but this has changed because I am footballer."
Sambo, a former fixtures secretary for Zimbabwe's Professional Soccer League, said he came up with the idea of forming a league for HIV-positive women to cash in on football's appeal.
"Realising that football is a sport which attracts a very large following and for the purposes of demystifying HIV/Aids, I decided to form a league of HIV/Aids positive ladies," he told AFP.
"During matches, literature on HIV/Aids is distributed and we have a mobile testing centre. We have also identified other 46 teams and we plan to have this project nationwide."
Sambo has sponsored the league to the tune of $10 000 but said the money was not enough to cover running costs and travel expenses.
The teams play in a makeshift stadium in the Harare suburb of Epworth which has two rocks sticking out in the middle of the pitch.
At the training session, play was stopped at one stage when a piece of wire punctured the only ball, forcing coach Jonas Kapakasi to cycle to a nearby shopping mall for repairs.
"This is what we go through sometimes," he said. "But the ladies are so united. Even if one the players is not feeling well, she turns up to training because other team members give her emotional support."
Fending for themselves
The players get ARVs from Medecins San Frontiers, while a local bank and petrol company have also chipped in with kits.
While football acts as therapy to relieve stress, team members still have to fend for themselves and their families, with some poaching firewood from a neighbouring farm to sell.
The oldest member of the team is Mary Chinyama, 48, whose husband died in 2002.
"I now get along very well with other members of my family because of football," she said while cradling another teammate's child.
Zimbabwe's ministry of health and child welfare says the HIV prevalence rate in the 15 to 49 age group declined to 13.7% in 2009 from 33% 10 years earlier.
The government is struggling to provide ARVs to those who cannot afford with less than half of those in need currently accessing the drugs.
Because HIV affects the immune system, there were many concerns about the effect on and vulnerability of people living with HIV in the H1N1 epidemic
This wasn't mentioned during the conference call, but it's worth noting a couple of key ways in which the flu -- be it the seasonal variety or H1N1 -- is different from a cold. They're both caused by viruses, and the symptoms generally are quite similar, but flu symptoms are generally more severe and last longer (often more than week, whereas a cold is usually wrapping up when it reaches a week old). You're also much less likely to have a fever if all you have is a cold.
"The licensing process is similar to the way flu vaccines are made every year," Dr. Shimabukuro said. "There's a long history of use of influenza vaccine and it has an excellent safety profile. We do not anticipate that there would be any more adverse events from the H1N1 vaccine than from the regular seasonal vaccine." Those "adverse events" are usually pretty mild, involving just some soreness around where the shot was given. Sometimes the shot can cause some mild flu-like symptoms for a day or two.
Thursday, August 20, 2009
Obesity and diabetes are the principal underlying conditions associated with death in patients with swine flu, a report published in the August 20th edition of Eurosurveillance shows. There is no indication in the report that HIV increases the risk of death from swine flu.
The authors from the French Institute of Public Health analysed all deaths caused by swine flu before 16th July.
A total of 564 deaths around the world were identified and detailed information was available for 213 of these.
Obesity and diabetes were the underlying health conditions most associated with death (57 cases). Respiratory disease was present in 37 patients, heart disease in 36, and unspecified other infectious diseases in 19.
Immunodepression was recorded in 16 patients, including five cases of cancer, two of transplantation, and three of auto-immune disease. HIV was not mentioned by the authors as being a specific risk factor for an increased risk of death.
The analysis also showed that the overall mortality rate in patients infected with swine flu is low.
Individuals with HIV are not thought to be at increased risk of contracting swine flu. Nor are HIV-positive individuals thought to have a greater risk of developing swine flu-related complications, unless they have a CD4 cell count below 200 cells/mm3. Patients with weak immune systems should always seek medical advice from their HIV clinic if flu symptoms persist or worsen despite antiviral treatment for flu, not least because symptoms of an opportunistic infection may be mistaken for flu.
Last week, the government announced its swine flu vaccination plans. It is expected that a vaccine will become available in the early autumn. Individuals with HIV will be one of the priority groups to receive the vaccination.
Valliant L et al. Epidemiology of fatal cases associated with pandemic H1N1 influenza 2009. Eurosurveillance 14: 33, August 20th, 2009.
August 21, 2009
Obesity and diabetes are the two main underlying conditions associated with death in people with H1N1 virus (swine flu), according to a new study published in the August 20 edition of Eurosurveillance as reported by aidsmap.com. The authors, from the French Institute of Public Health, do not cite HIV as a mortality risk factor.
Furthermore, HIV-positive people are not thought to be at increased risk for contracting H1N1, nor are they thought to be at greater risk for developing swine flu complications unless their CD4 count drops below 200.
The study—which examined H1N1-associated deaths before July 16—also found respiratory disease and heart disease to be underlying risk factors. Immunosuppression was reported in 16 patients, including five cancer cases, two transplantation patients and three people with autoimmune disease.
Of the 564 H1N1-related deaths identified, detailed information was available for only 213.
Inflammation is an early response to infection or injury.
What Is Inflammation?
Inflammation is an early response to infection or injury. It is a "non-specific" immune response. It does not vary depending on the type of injury or infection.
Most of the body's healing tools circulate in the blood. These include antibodies, T-cells and other white blood cells, clotting factors, chemicals that may kill germs, and nutrients to feed damaged cells.
Injured cells release chemicals that communicate with the immune system. They attract healing cells and chemicals. Inflammation helps these healing factors leave the bloodstream and work on damaged tissue. Blood vessels enlarge, increasing blood flow to the damaged area. Inflammation changes the structure of blood vessels, making it easier for plasma to pass into the surrounding tissues. This causes swelling. Inflammation also causes redness, heat, and pain. In addition, it reduces tissue function.
Coagulation (the formation of blood clots) is part of inflammation. This can occur in the skin (for example, stopping bleeding from a cut) or inside the body (for example, building a barrier around germs or protecting a damaged area in the lining of a blood vessel.)
Coagulation has to stay in balance with the breakdown and removal of clots. This process is called fibrinolysis. Fibrin is the protein that forms clots. Lysis means reduction or destruction.
Acute and Chronic Inflammation
Acute inflammation normally occurs in response to physical injury such as a cut or sprain, or a localized infection. Acute inflammation ends when specific chemicals circulate to "turn off" the inflammation.
However, inflammation can also be chronic. Chronic inflammation causes tissue damage and scarring. The blood vessels stay permeable. White blood cells continue to leave the blood and accumulate in the tissue. Immune cells can "wear out" and stop working correctly. Chronic inflammation eventually destroys surrounding tissue and creates scar tissue. It can also contribute to allergies, asthma or "autoimmune" diseases like arthritis and multiple sclerosis. In autoimmune diseases, the body sometimes makes antibodies that attack healthy cells.
Ongoing inflammation is associated with many chronic diseases. These include heart failure, kidney problems, metabolic syndrome, diabetes, dementia, and frailty.
HIV Causes Inflammation
HIV is a chronic infection. Even patients with an undetectable viral load make new virus. This may contribute to continuing inflammation. Antiretroviral medications reduce inflammation, but not to normal levels.
Over time, HIV weakens the immune system. Old infections may come back. Almost everyone with HIV is also infected with cytomegalovirus (CMV, see Fact Sheet 504.) Latent CMV infection can become active in people with HIV, causing additional Inflammation.
Other infections or illnesses (co-morbidities) are important in understanding the health of people with HIV. Hepatitis or herpes infections (see Fact Sheet 507) are also common.
Leaky Gut Syndrome
The mouth and digestive tract, like the skin, protect the body from "outside" threats. At the "top" end of the digestive tract is the mouth. Poor dental health can lead to general infection and inflammation (see Fact Sheet 653.)
The gut normally contains about 70% of the body's immune cells. The intestines have a surface area approximately equal to the size of a football field! The immune system in the gut is called gut-associated lymphoid tissue or GALT. It protects the body from germs in food. HIV damages GALT very early in infection.
Inflammation in the gut makes it easier for germs to pass out of the intestine and "leak" into the body's circulation. This leaky gut contributes to overall (systemic) inflammation. Inflammation in the gut also contributes to poor absorption of nutrients.
Lipopolysaccharides (LPS) are molecules that are part of the coating of some bacteria normally found in the intestines. LPS produces a strong immune response. High levels in the blood are a sign of "leaky gut" syndrome.
Inflammation in people with HIV shows up in high levels of some elements in the blood:
Treating HIV Inflammation
Researchers are looking into anti-inflammatory drugs that have been used in other diseases such as rheumatoid arthritis, and trying to learn from other studies of immune activation, inflammation, and aging.
Another area of research in HIV involves the bacterial environment of the gut. These bacteria can affect the outcomes of many diseases. Interventions that affect these bacteria may be helpful. This includes "probiotics" such as acidophilus and other live cultures that stimulate the growth of helpful bacteria in the gut.
The Bottom Line
Inflammation is a complex process. Acute inflammation is a normal part of the body's healing process. Chronic inflammation can damage the body and is associated with many chronic health problems, and with normal aging.
HIV is an inflammatory disease and causes chronic inflammation. This can accelerate physical changes normally associated with aging.
Various possible treatments for chronic inflammation are being studied.
Cape Town - In a sign of hope on a continent ravaged by Aids, a fertility clinic has started a service allowing couples infected with the virus to have a healthy baby.
The Cape Fertility Clinic is the first in Africa to open a laboratory for HIV-positive patients, enabling them to conceive and give birth to HIV-negative babies by using procedures such as in-vitro fertilisation. "HIV is no longer seen as a death sentence but a chronic disease," says Klaus Wiswedel, one of the clinic's directors. "And people with chronic diseases are entitled to have fertility treatment. We can safely deliver an HIV negative child and, with the right treatment, the parent can live a long life." About five or six couples, with either one or both partners carrying the Aids virus, visit the clinic every month. It is only for the favoured few with enough money to pay for fertility treatment and is a drop in the ocean compared to the huge numbers of infected people. But it is a small symbol that, after years of despair, Africa is making progress in protecting unborn child from Aids - and in prolonging the life of the parents. Life-saving ARV medicines About two million people are receiving lifesaving antiretroviral medicines in Africa, which bears the brunt of the Aids epidemic, up from 100 000 in 2003.
This has been accompanied by a dramatic increase in the number of pregnant women receiving drugs to stop them from passing the HIV virus to their children. According to a UN report on "Children and Aids" published for World Aids Day, the number of pregnant women getting therapy in low and middle income countries has tripled in the past three years. For some countries the gains have been even more striking, thanks to an increase in donor interest and funding. In dirt-poor Malawi and Lesotho, less than five percent of pregnant women infected with the Aids virus got drugs to protect their unborn babies in 2003. This increased to 32% in 2007, according to the report, which was prepared by Unicef, the World Health Organisation, UNAids and the UN Population Fund. In Mozambique the proportion of pregnant women on therapy increased from three percent to 46%; in Uganda from nine percent to 34%; in Swaziland from five percent to 67%; in Zambia 18% to 47% and in South Africa from 15% to 67%, the report says.
Even stricken Zimbabwe, where the health service has collapsed, managed an increase from eight percent to 29%. In Botswana, which has one of the highest Aids rates in the world but has enough resources and commitment to provide treatment, 95% of HIV positive pregnant women were given antiretroviral drugs to protect their children in 2007. 'A human right' "The prevention of mother-to-child transmission of HIV is not only effective, but also a human right," said UNAids Executive Director Dr Peter Piot, "We are seeing good progress in many countries, especially in parts of Africa, but we need to significantly scale up HIV testing and treatment for pregnant women." The standard advice given to men and women who are infected with the Aids virus is to avoid unprotected sexual intercourse. But the Cape fertility clinic's Wiswedel says this should not deny stable couples the right to have a child. If the woman is HIV-positive but her partner is free of the virus, the procedure is artificial insemination, Wiswedel says. If the man is HIV positive, then the sperm has to be cleansed of the virus, he says. The clinic has a separate HIV laboratory to make sure there is no risk of passing infection to its other clients. Once pregnant, an HIV positive woman has to be followed by an HIV specialist and has to have a Caesarean delivery to reduce the risk of transmission to the infant. Some clinics in the United States and Europe have offered such treatment for years. But in Africa, the Cape Town laboratory is a first. Wiswedel says couples have come to him from all over the continent and he expects their numbers to increase.
"We jumped into the deep end of the pool because more and more patients want to receive treatment," he says. We saw a huge need for this."
Most life insurance companies in southern Africa still require applicants to take an HIV test and deny cover to those who test positive. Without life insurance as security, financial institutions are reluctant to lend money to buy a house or start a business.
"The denial of life cover inflicts on other rights," said Amon Ngavetene, coordinator of the AIDS Unit at the Legal Assistance Centre (LAC), a non-profit legal advice organization in Namibia.
The LAC has called on the Namibian government to pass legislation prohibiting insurers from discriminating against people living with HIV, but so far to no effect.
Ngavetene noted that HIV-positive individuals were discriminated against even after their deaths. Those who contract HIV after taking out life cover and fail to notify the insurance company run the risk of having their policies invalidated if their death certificate shows they died of an AIDS-related illness.
"A person could be paying for 15 years, and then when they die their family can't get a penny," Ngavetene told IRIN/PlusNews. "It's unconstitutional but very difficult to challenge because it becomes an issue of the terms of the contract."
Insurance companies in Botswana also require applicants to take HIV tests, but Linny Keorapetse, an assistant legal officer at the Botswana Network on Ethics, Law and HIV/AIDS (BONELA), said at least one company, Metropolitan Life, would cover HIV-positive people, although at a much higher cost.
Those who test negative are required to re-test every five years, but a positive result at a later stage means the policy is automatically converted from life insurance into pure savings.
Botswana has the second highest HIV prevalence rate in the world, with nearly one in four adults living with the virus, but it also has one of the most extensive ARV programmes in the region, with free treatment reaching about 90 percent of people who need it. "Nowadays, people living with HIV who take treatment can live another 20 years," Keorapetse pointed out.
A different approach
Instead of discriminating against people living with HIV, Ross Beerman, managing director and co-founder of AllLife, a South African company, decided to take advantage of this gap in the market to specialize in providing HIV-positive people with life cover.
"We have a very different operating model," he told IRIN/PlusNews. "In a standard model, you price policies based on historical behaviour ... we price on forward-looking behaviour: if you're HIV positive, we don't really care how you behaved in the past, we care about you staying healthy in the future."
Policyholders must commit to going for regular blood tests and starting ARV treatment when their CD4 count [a measure of immune system strength] drops below 200. Once on ARVs, AllLife closely monitors a client's adherence via links with healthcare providers, and regular cellphone text message reminders and warnings if appointments are missed.
Premiums are between two and five times higher than normal life insurance policies (an average monthly payment of about US$40 buys $40,000 worth of life cover), but can be used to secure home loans and start businesses.
In addition, being a policyholder appears to have a positive health effect. "Just by virtue of being our clients they're going for regular monitoring," said Beerman. "They actually get approximately 15 percent healthier after six months; the realization they can have an impact on their longevity means they start behaving in more healthy ways."
In contrast, HIV-positive people in Botswana are steered towards funeral policies or advised to join burial societies. "Currently, there's no company that offers life insurance specifically for people living with HIV," said Keorapetse.
AllLife relies on fairly sophisticated administrative and IT systems to function efficiently, which would be difficult to replicate in less developed countries in the region where, for example, blood test results are not captured electronically.
Nevertheless, Beerman said, people living with HIV have the right to participate in the mainstream economy "in a normal way".
"Please don't leave me. I've tested positive.”
On his 35th birthday Wynand Griesel*, inebriated from one too many celebratory drinks, got behind the wheel of his car. For the first few hours of what should have been a happy birthday, he ended up behind bars in Sea Point police station.
Standing in his cell, the only thing he could think about was how he could get off the hook.
Outside dawn was breaking. On the cell wall, he could just make out "Nice to kill'', scratched into the powder-blue paint with a fingernail. "Next time, think,'' someone had written centimetres away, while a faint message on the opposite wall read: "My wish was to be happy and try to start over''.
Seeking sanctuary in a holding cell
While Wynand tried to keep his mind occupied, his partner Neil Strydom (42)*, was locked in another holding cell, desperately trying not to lose his mind and to live through the pain.
"Time heals,'' was just visible to Neil, scratched into the wall before him. He kept repeating it while seven co-detainees took turns raping him.
The situation in the country’s prisons and holding cells are a direct public health issue, experts have warned. In its latest report, the organisation Just Detention International paints a gloomy picture, saying the way people are detained has a direct link to the country’s HIV epidemic.
The HIV-prevalence in South African jails and holding cells is twice that of the infection in the general public. By not preventing sexual violence amongst detainees, the government is sentencing people to the lifelong management of a disease, before they have even been found guilty of anything.
Neil was locked up an hour after Wynand. For "interfering" with a peace officer. To calm him down after Wynand's arrest. To shut him up.
"Jou mond is mos lekker los. You've got a big mouth. Let's see what happens to someone like you. We'll speak tomorrow,'' the policemen told him.
As soon as he entered the cell, he knew he was in trouble. He could smell it in the damp and the detainees’ sweat.
A night full of pain
The police had removed his belt and rings, but he still had a silver bracelet. The police hadn’t spotted it, but one of the men in the cell did
"If you give it to me, I’ll protect you," the faceless voice whispered, when the door had clanged the cell into darkness. Neil handed it over.
"We are going to f*** you till you bleed,'' one of the other detainees growled. Someone grabbed his arms and ripped at his clothes.
"Don’t fight.’’ There was no chance of that. His 42-year-old, 60kg body was no match for the men. They took turns ripping him open. He stopped counting after the seventh man took over. He tried to focus on something else, but he felt the blood trickling down his leg.
He screamed, but no-one came. A policeman later joked that if they had to open a cell every time someone screamed, they wouldn’t get any sleep.
Finding out you’re positive
Rain drops trickled down the pub's window. More than three months had passed. Wynand had been waiting patiently for almost an hour for Neil to open up and tell him the result of the test. He had gone to the doctor on his own without letting Wynand know.
Neil drained his third Castle draft and stretched his hand across the bar to touch Wynand's. The waves crashed onto the Bantry Bay rocks throw up wisps of foam. The sky was steely grey.
"I'm sorry, so sorry. Forgive me,'' Neil broke the silence at last. "Please don't leave me. I've tested positive.”
After a couple of drinks they walked home, Wynand’s arm hooked through Neil’s. It smelt clean, with the rain pouring down. Every time Wynand tried to speak, Neil's face became a mask of agony.
Wynand was crying, but no-one would notice – his face awash with early spring rain. At their flat in Victoria Road he had to carry Neil up the stairs.
"Will you ever touch me again?'' Neil asked. "I don't want to infect you.''
"I won't leave you. Just give me a chance.''
Pulling Neil towards him, trying to envelope him, Wynand added: "I wish I could have protected you. I wish I had been there.''
The meeting of the lovers
They had met at a crossroads in both their lives. Neil was still coming to terms with his dad's death from a heart attack. And he had just lost his job, after the owner of his interior design company died of cancer. He was a white, middle-aged man without a job in South Africa.
Wynand was coming to terms with his sexuality. They met in Manhattans, a gay-friendly bar and restaurant in De Waterkant, the “pink village”.
Wynand did everything possible to resist being drawn deeper into a serious relationship with Neil. But Neil made him feel that he'd been missing out on something. He'd been missing out on his second half.
After the test, Wynand watched for signs of the virus breaking down his lover’s body. But all he wanted to see was the smile, and that returned a little more slowly.
Neil noticed that he looked 'hollowed out’. His body reminded him of death, he said. But it made it easier to know that Wynand loved him.
His feet hurt. They couldn’t go on hiking trips, as they’d done before. It was too painful.
Peripheral neuropathy made his feet, hands and back to go into spasms. The human immunodeficiency virus (HIV), which causes Aids, causes extensive damage to the central and peripheral nervous systems.
A rapidly progressive, painful polyneuropathy affecting the feet and hands is often the first clinically apparent sign of HIV infection. The pain never goes away.
After work, it became a ritual. Neil would take his socks off and Wynand massaged each toe, the bridge of each foot, each heel.
Eating was hard labour to Neil. Once he started ARVs, his appetite became almost non-existent. Wynand kept his bedside table stocked with tempting snacks: nuts, biltong and his favourite soul food, Chipniks.
Safe sex was always an obsession to Wynand. Twice a year he went for an HIV test.
One of the first things Neil noticed about Wynand, when he paid for a meal, was the free clinic visitor’s card in Wynand's wallet.
Sleeping with the enemy
Until Neil's test result, Wynand had never been close to anyone with the virus. Now he was sleeping with the enemy - and he’d never been happier.
The love was more than the fear. But he still got tested every six months – just to make 100% sure.
Every night before getting into bed, Neil sorts four types of medicine into two small heaps of pills -one for tonight and one for tomorrow morning. One Combivir tablet in each pile. One Virimune in each. That takes care of the virus.
Half an Epilim 500, an anti psychotic, tonight. The other half tomorrow. And a yellow and white Venlor XR 150mg in the morning. An anti-depressant. There are side effects: he lost his appetite, lost 10kg in two years, has constant headaches and feels drained and tired.
Sometimes Neil wonders why he keeps on taking the medicine. Then he repeats his mantra to himself: "You don't want to die. You don’t want to die.''
* Pseudonyms used
Treatment: the earlier the better.
HIV treatment starts too late, was the overriding message at this year's International Aids Society (IAS)’s conference in Cape Town. The South African government’s policy until now has been to only provide free ARV treatment to patients with a CD4 count lower than 200.
"There are cases where the immune system at a CD4 count of 350 are already compromised and the possibility of opportunistic infections become much more likely," said Professor Prashini Moodley, head of the Department Infection Prevention and Control at the University of KwaZulu-Natal.
"HIV drives TB."
Neil was lucky. After he tested positive he was put on ARVs straight away. Would he still be as healthy as he is now if his doctors waited for his CD4 count to drop below 200? Would his partner still be HIV negative if treatment was postponed until he was at death’s door?
"Treatment saves lives and puts people back to work and makes them productive as soon as possible," says Julio Montaner, director of the IAS.
"The use of ARVs inhibit HIV transmission. For discordant sexual partners with a different HIV status it is important to start the treatment way above a CD4 count of 350 to keep the HIV negative partner virus free."
In 1996 the IAS issued treatment guidelines recommending combination therapy containing three or more antiretrovirals. This type of regimen called highly active antiretroviral therapy, or HAART.
Multiple drugs given concurrently were more effective, however this increases the potential for side effects. That is why clinicians were reluctant to start throwing handfuls of pills at people living with HIV.
Around one in seven adolescent females with HIV have been pregnant
Around one in seven adolescent females with HIV have been pregnant, according to an audit of UK clinics reported at the joint conference of the British HIV Association (BHIVA) and the British Association of Sexual Health and HIV (BASHH) last month.
Most of the pregnancies were unplanned and a quarter were terminated. Although there were problems with adherence to antiretroviral medication in many cases, fortunately none of the pregnancies resulted in transmission of HIV to the infant.
These cases highlight the need for sexual health education for those young people who acquired HIV from mother-to-child transmission in the 1980s and 1990s. To help health professionals with this work, the HIV in Young People Network (HYPNET) and the Children’s HIV Association (CHIVA) last week published draft guidance on the management of sexual and reproductive health for adolescents living with HIV.
The pregnancy audit was conducted by sending a questionnaire to 19 participating clinics, who were asked to review the medical notes of all vertically-infected females who were aged twelve or over attending the clinic. Information was collected on a total of 172 individuals, of whom 27 had had a total of 36 pregnancies.
Of the 36 reported pregnancies:
Of the 18 live births, 89% of the mothers were on combination therapy at the time of delivery. Women on therapy had a median CD4 count of 252 cells/mm3 (range 54-437) and a median viral load of 79 copies/ml (range < 50 to 588,844).
In only 8 of the 18 live births (44%) did the mother have an HIV viral load of <50 copies/ml before delivery. 80% of mothers had poor adherence to treatment during pregnancy, with two being given Directly Observed Therapy (DOT).
One third of the babies were delivered prematurely, and five of them required neonatal intensive care. Three had a low birth weight. No congenital anomalies were reported.
No cases of HIV transmission were recorded.
Two-thirds of the young mothers were reported as having complex social needs, with one quarter of their babies requiring foster care.
This is the first time that specific guidance on managing the sexual and reproductive health of HIV-positive adolescents has been published. The document makes it clear that, even if the issue is not raised by the young person, then paediatricians should take responsibility for covering sexual health education and needs during consultations, with the process starting well before sexual maturity is reached. The guidance states that HIV-positive adolescents require the same sexual health information as their HIV-negative peers, as well as further help on applying it while living with HIV.
Topics which need to be discussed include preventing the transmission of HIV and other sexually transmitted infections; contraception; symptoms and treatment of sexually transmitted infections; vaccinations; HIV disclosure; post-exposure prophylaxis; conception options and fertility issues; pregnancy and avoiding mother-to-child transmission; options if there is an unplanned pregnancy; sexual exploitation and sexual violence; sexual difficulties; psychological support for negotiating safe sex, self-assertion, bullying or other issues.
The guidance explores some of the issue involved in delivering sexual health work with this age group. Sexual health services for young people should be confidential (without disclosure to a parent or guardian), provided that the young person is assessed as being ‘Gillick competent’ (has the maturity to make their own decisions and to understand the implications of them). For under 16s, Gillick competence needs to be assessed at each clinical visit as it can change over time.
The guidance notes that adolescents value consultations that are non-judgemental, give them correct information and which maintain confidentiality. Professionals are encouraged to use simple language, check understanding and not overload adolescents with too much information. They should not make assumptions about whether the young person is sexually active or what their sexuality is.
The draft guidance is open for comments and feedback until May 28.
Williams B. Pregnancy outcomes in women growing up with HIV acquired perinatally or in early childhood. HIV Medicine 11 (supplement 1), P144, 2010.
Among the many reasons that African-Americans have a greater number of hospitalizations and don't respond as quickly or as positively to HIV treatment as members of other races is that they are more likely to be diagnosed with HIV later in the course of the disease.
Since I began working as an HIV treatment educator in New York City, I've seen the faces of those I served change. As those faces grew to include primarily African-Americans and Latinos, I found myself both inspired and moved by my clients.
As a whole, they were deeply motivated to do as well on their treatment as possible. Many of them carried little cards logging their viral loads and CD4 counts. And they all knew their HIV meds like the back of their hands.
I found myself inspired by their desire to take charge of their health, but I also noticed that their journeys often had additional challenges. There was the fight to stay off the street, to stay off drugs, to find a place they could call home. Often there was a fight to repair their relationships with children, families, and loved ones. Many also had hepatitis C, diabetes, or high blood pressure. And many felt they just couldn't trust their doctors, perhaps due to their own experiences in the health system or from the shared distrust passed down from abuses like the infamous Tuskegee Syphilis Study (in which 399 African-American men were denied treatment for over 30 years).
Differences in Care
Among the many reasons that African-Americans have a greater number of hospitalizations and don't respond as quickly or as positively to HIV treatment as members of other races is that they are more likely to be diagnosed with HIV later in the course of the disease. In one survey of almost 6,000 people with HIV in 16 states, not only were African-Americans more often diagnosed at a later stage of the disease, but they were more likely to be tested for HIV only after having symptoms. This is significant, since those diagnosed later, when their immune system is weaker, have a harder time lowering their viral load and fighting other infections. So this is one reason for the greater impact of HIV among African-Americans, but there are also others.
Another critical factor facing many African-Americans is access to care. In the U.S. it has been found that women, African-Americans, and those with a history of injecting drugs are less likely to receive HIV treatment. While improved access to care has been a target of many programs, it continues to be an issue for African-Americans. In one study of 968 people who stopped or never started HIV treatment, African-Americans were almost twice as likely to change clinics or doctors, and most stopped medications during the study. In addition, African-Americans were almost twice as likely to hide their HIV status, showing that the stigma of HIV may be an obstacle to taking medication.
African-American women in WIHS reported significant levels of depression, but the study found that they were less likely to receive mental health treatment than other women. Other studies have shown that poverty, inadequate health insurance, racial discrimination, and mistrust of the medical establishment make access to care difficult and in some cases impossible. Age is also a factor -- at the recent Conference on Retroviruses and Opportunistic Infections (CROI) in Montreal, Alexandra Oster of the CDC reported on a study showing that age may be associated with limited access to care. When she looked at why 556 women with HIV had missed their first or annual Pap smears (a screening test for cervical cancer), she found that older age and lower CD4 counts were highly associated with not having the test. This is of particular concern, as we are seeing more people over 50 living with HIV.
Other Health Concerns
African-Americans are also often battling other diseases while living with HIV. From 1997 to 1999, the HIV Research Epidemiology Research Study (HERS) followed 1,300 women, mostly African-American, some of whom had HIV and some of whom did not. What they found was that there were fewer hospitalizations due to HIV than in earlier years, but the women with HIV in the study were hospitalized more often due to liver disease.
Co-infection with HIV and hepatitis C virus (HCV) has also affected African-Americans more than other ethnic groups. They are more often infected with HCV genotype 1, a type that is harder to treat, but that alone doesn't explain why they don't do as well on treatment. One study of standard HCV treatment (interferon and ribavirin) found that significantly fewer African-Americans responded well than did whites, even though both groups had genotype 1. And this study was not the only one to find this. In another study, as few as 26% of African-Americans on treatment maintained an undetectable viral load for six months, compared with 39% of whites. A larger number of African-Americans also reported HCV complications and were more likely to suffer from liver cancer.
All this suggests that there may be genetic factors at play in some of the differences in response to treatment. One study found that African-Americans were more likely to have a genetic mutation called a CYP 2B6 allelic variant. People who have this mutation have difficulty breaking down Sustiva, which can build up in their blood and lead to more side effects like vivid dreams or difficulty concentrating. Not surprisingly, more African-Americans stop taking Sustiva, and that could lead to other problems. Having the CYP 2B6 mutation may cause Sustiva to linger in the body after it is stopped, increasing the risk of resistance.
ACTG 384, a study reported at the 2009 CROI, looked at 156 African Americans who had peripheral neuropathy (numbness or pain in their hands and feet). The researchers looked at the DNA of their mitochondria (the energy centers of cells). What they found was fascinating: people who had the L1c mutation in their mitochondria had a higher risk of having peripheral neuropathy. This mutation is different than one previously found among whites, and suggests there may be genetic reasons why different ethnic groups have a greater risk of certain side effects. A high number of African Americans (29%) experience peripheral neuropathy, and this research is the first step in understanding why. More studies are planned.
Another genetic factor found to affect the way African-Americans react to HIV treatment is the ApoC-III mutation. One group of researchers looked at gene mutations and the race or ethnicity of 626 patients enrolled in ACTG studies. While African-Americans had lower levels of triglycerides (a type of fat in the blood), those with the ApoC-III mutation had higher triglyceride levels after taking an HIV protease inhibitor. Latinos and other ethnic groups with this same mutation didn't see their triglycerides rise as high. This suggests that both race and genetics play a role in the way people fare on treatment.
African-Americans with HIV are at greater risk for other illness and diseases. One group of researchers noted that they were twelve times more likely than whites to develop end-stage kidney disease. This was true even for those doing well on HIV treatment.
African-Americans with HIV are also at greater risk for other illness and diseases. For example, one group of researchers from Baltimore noted that they were twelve times more likely than whites to develop end-stage kidney disease. This was true even for those doing well on HIV treatment. So HIV in itself seems to put African-Americans at greater risk for kidney disease, as well as diabetes and hypertension. In fact, a large European study (EuroSIDA) has found that people with HIV are more likely to also have diabetes and hypertension if they have kidney disease. Like the CDC study, they found this linked to lower CD4 counts, an AIDS diagnosis, and older age.
The research is clear: African Americans face a host of genetic, physical and emotional factors that deeply affect their HIV treatment. While the CYP 2B6, L1c, and ApoC-III mutations have been found, there may be other mutations responsible for the differences in the way African-Americans respond to treatment. In addition, we also need larger studies to learn how best to modify treatment in people with these mutations. For example, one group started adjusting HCV treatment doses in African-Americans by weight. Another study of 362 African-Americans found that when their ribavirin dose was adjusted they were twice as likely to bring their HCV levels to undetectable and keep them there than those on the standard dose. Approaches like these may prove to be essential for African-Americans.
Much of this information supports what I already felt inside: that race does matter and that in many ways, African Americans experience HIV differently. So how do we address these differences? While it is clear that we need more information, the first step is acknowledging that there is a difference, and that it is complex. It is biological, social, and cultural -- a combination of factors that affects every African-American living with the virus. Some of the answers will come as more studies are done. Others will come from within each one of us, as we learn from each person with HIV and work to meet their needs.
Donna M. Kaminski, ACRIA's former Associate Director of Treatment Education, is a fourth year medical and MPH student.
"We didn't care about the future."
Johannesburg - The future was something Mlungisi Dlamini took for granted; it was not something he planned for until he was diagnosed HIV-positive. He now works with the South African AIDS lobby group, Treatment Action Campaign (TAC), and talked to IRIN/PlusNews about his diagnosis and how it changed his life for the better.
"I was diagnosed in 2000 but I usually say I was diagnosed in 2001, because when I was diagnosed in 2000 I didn't receive any counselling. I was just tested because the doctor suspected something and I agreed.
"When he delivered the results he just came and said, 'Okay, you are HIV-positive and you don't have to go around just killing other people."
"In 2001 there was a roll-out of voluntary counselling and testing ... that's when I went [for testing] again and received proper counselling. Being diagnosed with HIV - I didn't have a problem with that because I just wanted to know, believe you me, I disclosed the very first day to my family and to my friends.
"I started getting sick in 2003-04, when the government started rolling out ARVs. I had pneumonia and I treated that, but it happened I had tuberculosis (TB) but the doctors [at the public clinics] couldn't find it for about five months.
"Finally, my former district coordinator at TAC sent me to a private clinic in Soweto, called Lesedi, [where doctors diagnosed my TB] and then I started TB treatment. I told the doctors to wait until I had stopped my TB treatment to start me on ARVs [antiretrovirals].
"ARVs changed my life a lot. I got exposed to the TAC, treatment literacy and virology, and that changed a lot in my mind, it gave me a will to love to help people to understand the virus.
"One of the things about growing up in the townships is that I always had bad company ... We didn't care about the future. We used to have this saying - it was from [a movie about the American mafia,] the Gambino family – 'Any meal might be the last'.
We used to live by that. We drank, we partied, we drove cars, had women – that was part of life in the township."
I can tell other people who are sick, who are also HIV positive, they can also do what I'm doing and they can also live healthy.
On Sunday 30th May, more than 23 000 runners took part in the Comrades marathon between Pietermaritzburg and Durban. One of the teams that participated was a group of HIV+ athletes. In this insert the runners from Positive Heroes explain the importance of showing that people with HIV are still able to achieve their dreams.
Positive Heroes is an organisation of people living with HIV. They are ordinary people, doing extraordinary things. Evelina Tshabalala is part of a team from Positive Heroes, who will run this year's Comrades marathon.
Evelina: I'm an athlete, I said OK I think we can make a team for athletes like to show people that we can do it even if you have HIV
It's 5.30 in the morning in Pietermaritzburg, and the start of the Comrades marathon. These runners face a gruelling 89km before they finish in Durban.
For the members of Positive Heroes, living with HIV hasn't stopped them from competing . They simply take their treatment on the run.
Evelina: The whole team will be taking their ARV's during the race, myself I take mine at 7 o'clock. But even when I'm running I feel myself that something must happen now and then I check my time and I see its 5 min to seven so I take my ARV's.
One of the other team members, Kenneth methula was hospitalised last year with tuberculosis. He's run the Comrades seven times before but this year is different.
Kenneth: But for me this is my eighth race and I have no fear, I have no fear (laughs). It's just that it's my first year running with this virus, so I musn't panic, and I don't want to do anything that will make me doubt.
Willie Engelbrecht discovered he was HIV positive in 2001. He has continued to run marathons to prove he too can achieve great things . Despite his HIV status.
Willie: You can feel the sickness in your body, and this sickness is very sneaky, it unravels very slowly in your body, when you look again you just get weaker, get weaker in your legs
We can show the people outside that we can fight this sickness and that we can still stand on our own two legs. We're not going to lie down or be pushed down, we can still move forward.
Of the 23000 runners who started the race, not all of them completed it. All of the positive heroes team crossed the finish.
Participant: I feel very well, very strong. I was so happy, I break my time, my 10hours.
The comrades marathon is the ultimate test of human endurance, and it's a major achievement for any runner.
This was best race, I don't feel sore in my body and it's my 4th comrades that I've done
I can tell other people who are sick, who are also HIV positive, they can also do what I'm doing and they can also live healthy.
medication that restores key elements of the immune system
UCSF researchers have identified an existing medication that restores key elements of the immune system that, when out of balance, lead to a steady decline in immunity and health as people age.
The team found that extremely low doses of the drug lenalidomide can stimulate the body's immune-cell protein factories, which decrease production during aging, and rebalance the levels of several key cytokines – immune proteins that either attack viruses and bacteria or cause inflammation that leads to an overall decline in health.
The initial study, which was designed to define the dose range of such a therapy in a group of 13 patients, could lead to a daily pill to boost immunity in the elderly, the researchers said. Data will appear in the January issue of the journal Clinical Immunology, and can be found online here
The identification of a drug to reverse the immunological decline in aging, known as immunosenescence, is the culmination of years of research by Edward J. Goetzl, MD, at UCSF and the National Institute on Aging, into how cytokine levels change as people age, how that varies by gender, and which changes dictate whether someone will be healthy into their 90s or begin a downward cycle of decline starting in middle age.
"No one's really talking about longevity and lifespan now, but about 'health span,'" said Goetzl, director of UCSF Allergy and Immunology Research, which focuses on developing new diagnostics and treatments for allergic and immunological diseases.
"If, at age 50, your cytokine levels are the same as they were at 25, you'll probably stay healthy as you age," he said. "But if they're heading downhill, we need to do something about it. If you could take a low-dosage pill with no side effects, wouldn't you do it?"
In 2009, Goetzl had studied a group of 50 elderly adults through the National Institute on Aging, examining their levels of key cytokines – Interleukin (IL)-2, IFN-gamma and IL-17 – and discovered that truly healthy 70-80 year old women had the same levels of those as did healthy 20 year olds.
However, elderly men and frail women who showed increased levels of inflammatory diseases and weakened defenses against infections tended to have lower levels of the first two cytokines, which are protective, and higher levels of IL-17, which is linked to inflammation. That imbalance, the researchers found, began in late middle age.
They then set out to find a drug that could raise IL-2 and IFN-gamma and either have no effect on IL-17 or lower it.
"We now had a profile – in humans – that we could take to test tubes to say, 'Does this drug have a desirable effect?'" Goetzl said. "Our job was to find a therapy that not only works, but does so at a dose range with no side effects."
The team focused on three classes of drugs, among them the one that includes lenalidomide – a derivative of thalidomide – which is undergoing a renaissance, Goetzl said.
First introduced in the late 1950s as a sedative, thalidomide was never approved in the United States, but was withdrawn from the world market in 1961 after causing severe birth defects in infants whose mothers took the drug to reduce nausea during pregnancy.
In recent years, however, lenalidomide has been found to be an effective co-therapy for some cancers, particularly multiple myeloma and kidney tumors, as well as leprosy, at doses of 5 mg to 20 mg per day. Those cancers are tied to a drop in IL-2, the main cytokine that Goetzl's team had linked to declines in aging immune systems.
In this study, the team tested the drug in healthy seniors, each of whom were matched in race, gender and national origin to a healthy young adult participant. They found that extremely low levels of lenalidomide – 0.1 μM – optimally stimulated IL-2 production in the young people (21-40 years) roughly sevenfold, but stimulated IL-2 production in patients over age 65 by 120-fold, restoring them to youthful levels for up to five days. At that dosage, the drug also increased IFN-gamma up to six fold in the elderly patients, without suppressing IL-17 generation.
The researchers also found that lenalidomide had many other beneficial effects on the elderly participants' T cells, including better migration throughout the body, more efficient patrolling activity and longer survival after defending the body against an infection.
The team plans to begin larger-scale clinical trials in 2011 to test the drug's effectiveness and hopes for broader availability within a few years.
A Ugandan draft policy recommending that HIV-positive children be informed of their status by the age of 10 has drawn mixed reactions from health workers.
Kampala — A Ugandan draft policy recommending that HIV-positive children be informed of their status by the age of 10 has drawn mixed reactions from health workers.
The previous policy required parental consent to tell children under the age of 12, but the new policy allows health workers - with the support of parents and guardians - to disclose HIV status after the child has been prepared and an assessment of their ability to understand and deal with the condition has been made.
Dr Benson Tumwesigye, national HIV testing and counselling coordinator in the Ministry of Health, said the new policy was intended to improve children's adherence to their life-prolonging antiretroviral (ARV) medicines, which would be easier if they knew why they had to take the drugs.
"In my experience a child disclosed to at an early age copes better than those who get to know their status when they are teenagers. They easily adapt to the new lifestyle as adolescents growing up, and adhere better [to ARVs]," said Cissy Ssuuna, counsellor coordinator at the paediatric HIV clinic of the Baylor College of Medicine in the capital, Kampala.
The older ones cry because they come in confident that they have never had sex, not knowing that they acquired it [HIV] at birth
"With some children - as early as at four years - they know something is wrong with them and ask so many questions about why they are taking drugs and their siblings are not taking them; they ask their parents when they can stop taking drugs."
Ssuuna stressed the need to involve parents and guardians as much as possible, and to ensure children were properly prepared to deal with the news of their HIV status.
A Ugandan study in 2006 indicated a need for service providers to support caregivers in disclosing their children's HIV status to them, so as to ensure adherence to treatment.
Hard to tell
Another study, in 2008, said stigma linked to HIV was one of the main reasons disclosure to children was so sensitive. Parents also feared disclosing their children's status to them because it meant disclosing their own.
A lack of clear guidelines was another problem. "Counselling policy directors confirmed the absence of policy and training guidelines on the subject of parent-child disclosure," the study said. "Counsellors reported improvising, and giving inconsistent advice on this common concern of clients."
Many service providers were hesitant about adopting the new policy. "It is not a good thing because of stigma; some of these children do not understand, and they may boldly announce, 'I am HIV positive', in public places. They are not like adults who can evaluate what to say and when," said Norah Namono, public relations officer for Mildmay Uganda, an HIV treatment centre in the capital.
"Why should they say that children need to know their status when there are adults [who do not], like men who do not tell their wives?" one mother at the Mildmay centre asked. "There is no policy on partner notification; why should we sacrifice the children first?"
Ssuuna noted that disclosure, even to older children, could come as a shock. "The older ones cry because they come in confident that they have never had sex, not knowing that they acquired it [HIV] at birth," she said.
"The younger ones are partially disclosed to, telling them that they have to take their drugs religiously lest they fall sick because they have a chronic disease."
All the service providers IRIN/PlusNews spoke to said they would require more information and guidance before they could adopt the new policy.
Zinc supplementation significantly reduces the risk of CD4 cell counts falling below the critical 200 cells/mm3 level
13 May 2010
Zinc supplementation significantly reduces the risk of CD4 cell counts falling below the critical 200 cells/mm3 level, US investigators report in the June 15th edition of Clinical Infectious Diseases.
Daily doses of zinc also reduced reported diarrhoea.
“Nutritional levels of zinc supplementation given to HIV-infected adults resulted in a 4-fold decrease in the likelihood of immunological failure”, comment the investigators.
Adequate zinc levels are essential for good immune function. However, research has shown that as many as 50% of HIV-positive patients have deficient levels of zinc, and this has been associated with faster HIV disease progression and an increased risk of death.
Supplementation with zinc has been shown to delay HIV disease progression.
The risk of potentially life-threatening opportunistic infections is high for HIV-positive patients when their CD4 cell count falls below 200 cells/mm3. When a patient’s CD4 cell count falls below this threshold, they are defined as having experienced immunological failure, as are individuals whose CD4 cell count does not increase after starting HIV treatment.
Investigators in the US wished to see if daily supplementation with zinc helped to reduce the risk of immunological failure, illness, and death in a cohort of 231 HIV-positive patients in the United States.
These individuals were equally randomised to take a daily dose of zinc (15mg men, 12mg women) or a placebo. The study lasted 18 months, and the patients were monitored at regular intervals.
The mean age of the study participants was 43 years, 77% were black and 73% were men.
Antiretroviral therapy was being taken by 62% of patients, but only 29% of these individuals had an undetectable viral load.
At the end of the study, the patients who received supplementation had significantly higher zinc levels than those who were randomised to receive the placebo (p = 0.047).
Zinc supplementation was safe, and there were no serious side-effects were reported.
There was no evidence that zinc supplements lowered viral load. Similar proportions of patients taking antiretroviral therapy in both arms of the study had a detectable viral load.
However, the investigators found that zinc supplementation reduced the risk of immunological failure by approximately 75% (RR = 0.24; 95% CI, 0.10-0.56, p = 0.002).
On entry to the study, a third of patients reported a history of diarrhoea within the last twelve months, and 12% said that this had been severe. Zinc supplementation reduced the risk of diarrhoea by 60% (p = 0.19), and the investigators found a significant link between low zinc levels and reporting diarrhoea (p < 0.001).
There was no evidence that taking zinc supplements reduced the risk of death. A total of eleven patients in the treatment arm died compared to eight in the placebo arm.
A subgroup analysis was performed that was restricted to the patients taking antiretroviral therapy who had an undetectable viral load. In total, four patients experienced immunological failure, and all were taking the placebo.
The investigators suggest that zinc supplementation prevented immunologic failure by improving thymic function.
They conclude, “this evidence supports the recommendation of zinc therapy as a safe, simple, and cost-effective tool to improve the immune response and to reduce morbidity and should be considered as an adjunct therapy for HIV infection.”
Baum MK et al. Randomized, controlled clinical trial of zinc supplementation to prevent immunological failure in HIV-infected adults. Clin Infect Dis 50: online edition, 2010.