HIV Sensitive Language.

"As language shapes beliefs and may influence behaviours, considered use of appropriate language has the power to strengthen the response to AIDS." UNAIDS

Lyn's Comment:  Words have the ability to wound and add to stigma - even if not meant to harm.  Although it is sometimes difficult to think of all the "right" words, avoiding and challenging stigmatising language is one of the ways in which we "stand in the gap" for thos of us living with HIV.

Guidelines to HIV Sensitive Language:

UNAIDS Terminology Guidelines

Considered use of appropriate language has the power to strengthen the global response

Published by UNAIDS January 2011

Download here (PDF, 270.70 KB, 31 pg)

Guidelines for Reporting HIV

Guidelines have been produced for editors and journalists

Subtitle: Advice for editors and journalists writing about HIV in the UK

Abstract: The guidelines have been produced for editors and journalists writing about HIV in the UK. They dispel common myths about HIV, provide up-to-date information and sign-post journalists to further resources. The guidelines are supported by the National Union of Journalists, the Press Complaints Commission and the Society of Editors.

Download this document here (PDF, 2.19MB, 20pg)

The Denver Principles (1983)

There is no better way to cite the history of the PWA self-empowerment movement that to quote the principles articulated in Denver in 1983. They are as relevant and powerful today as they were then. 

Act Up - AIDS Coalition to Unleash Power

THE DENVER PRINCIPLES

(Statement from the advisory committee of the People with AIDS)

We condemn attempts to label us as "victims," a term which implies defeat, and we are only occasionally "patients," a term which implies passivity, helplessness, and dependence upon the care of others. We are "People With AIDS."

RECOMMENDATIONS FOR ALL PEOPLE

RECOMMENDATIONS FOR PEOPLE WITH AIDS

RIGHTS OF PEOPLE WITH AIDS

The True Cost of Stigma

Published by the International HIV/AIDS Alliance 2011

ISBN 978-1-905055-86-9

Subtitle: Evaluating the Social Return on Investment of the stigma and discrimination component of the Alliance’s Africa Regional Programme II

The Alliance is piloting the Social Return on Investment (SROI) methodology as a way to measure value for money in its programmes. This study was carried out in Zambia during 2010 to evaluate the SROI of the stigma and discrimination component of the Alliance’s Africa Regional Programme Phase 2 (ARP 2). You can see a related report on the right hand side of this page.

Download this document here (PDF, 689.49 KB, 36 pg)

HIV Stigma and Disclosure. Can Social Support Help? 10/09

One might wonder how much our friends and family influence our lives. Being HIV-positive, we rely on our social network for advice, emotional support, and information. In order to receive this support, we have to disclose our HIV-positive status. Disclosing one's status almost always has some risk attached to it. We might be rejected by the friend or family member, or might suspect discomfort from them when they find out about our status. The advantages of disclosing one's positive status are well known, and one of them is that there is a "practice effect." After carefully considering when and to whom to disclose, we might receive a positive response from our social network. This positive experience could encourage us to disclose our status to others as well.

On the other hand, negative experiences like rejection, and sometimes even physical abuse, contribute to one's perception about the social environment's views on HIV. The main thing affecting a person's perception of HIV stigma is the HIV-positive person's awareness of HIV-related actual or potential social disenfranchisement, limitation of opportunity, and negative change in social identity.

Perceived stigma may lead to various outcomes, including negative changes in self-concept and emotional reactions toward those who may invoke the stigma.1 HIV-positive individuals are likely to inform their significant others once they perceive that the rewards of the disclosure outweigh the associated costs.2

Disclosing an HIV-positive status can result in the gain of emotional, physical, and social resources. The emotional benefits include social support, relief that comes from sharing a burdensome secret, and the built-in reward of educating others about HIV.3 Reasons for nondisclosure are identified as fear of rejection, fear of stigma, privacy, self-blame, and missed sexual situations.4 These reasons are justified by the discloser's desire to reduce negative consequences.

In my recent research study, I assessed how HIV stigma and social support influence the readiness of HIV-positive individuals to disclose their status to their sex partners. The study provided possible scenarios in which individuals rated their level of willingness to disclose their HIV-positive status.

The primary purpose of this study was to explore and gain an understanding of factors that facilitate HIV disclosure to sex partners, as well as the barriers that prevent disclosure, from the perspectives of HIV-positive gay men.

The study sample was drawn from a social service agency in Chicago that provides a variety of programs to HIV-positive people. Participants were between the ages of 18 and 63, all indentified as gay, more than 90% of the participants identified themselves as white, and more than 60% reported having been diagnosed with HIV more than four years ago. Despite the long duration since diagnosis, more than 60% of the individuals were not aware of their CD4 count, and 80% of them reported receiving HAART treatment. There was no significant relationship between the lengths of diagnosis; presence of HIV-related symptoms or medication-related side effects; race or age demographics; or health status indicated by a CD4 count and perceived HIV stigma; social support; or confidence to disclose one's HIV-positive status to sex partners.

"I've told all but family, who have issues."

The individuals in the sample were found to have a wide range of perceptions of HIV-related stigma. Perceived social support was not associated with readiness to disclose HIV-positive status to sex partners. As previous studies have indicated, there are other predictors for HIV disclosure to sex partners, such as type of sexual relationship and adult romantic attachment style. Moreover, because this study did not inquire about the context of the participants' social support networks, it is possible that many members of these networks may be individuals who are HIV-positive themselves. This might be the case in this particular study, because all of the participants were recruited from an organization which offers opportunities for HIV-positive people to meet each other and engage in formal and informal interactions. This would be consistent with what has been reported by older HIV-positive individuals, with their friendship networks often including a large number of HIV-positive older adults.

The findings showed that individuals in the study who indicated a greater level of social support experienced a reduced level of HIV stigma. It appears that social support is critical for individuals to lower their perception of negative attitudes regarding HIV status. It was therefore determined that a higher level of social support was associated with lower levels of perceived HIV stigma, and that social support possibly played a significant role in how stigma was perceived.

The study did not find a relationship between social support and readiness to disclose one's HIV-positive status to sex partners. Moreover, disclosing one's HIV-positive status to sex partners is important from the standpoint of informing the sex partner about risk; however, disclosure alone is not enough to induce safer sex practices. It is possible that individuals who are confident enough to engage in safer sex practices are doing this as a way to avoid disclosure. Even though they will not admit their HIV-positive status, they feel initiation of safer sex practices fulfills their moral obligations. The study found a relationship between social support and self-efficacy to initiate safer sex practices. Although there is not direct evidence from this study, this tendency can be interpreted to mean that individuals perceive safer-sex practices as a secure approach to address their HIV-positive status. To initiate safer sex practices rather than disclosing one's HIV-positive status might indicate that the positive partner has had negative experiences with disclosure, and is not willing to risk the consequences that a disclosure could potentially cause. Social support, which likely originates from other HIV-positive gay men, provides encouragement for individuals to initiate safer-sex practices with sex partners, but doesn't increase the tendency to disclose HIV-positive status. It appears that this community endorses a sense of moral obligation to protect sex partners and thus initiate protected sexual activity. This hypothesis deserves attention in future research.

Another interpretation suggests that HIV-positive individuals seek out partners who are also HIV-positive. This might be the case, especially if one considers that most of the individuals in this study had been diagnosed with HIV longer than four years ago. During this time, they might have been involved in a social group comprised mainly of HIV-positive members whose status is well known to others, which makes disclosure unnecessary and commencement of safer-sex practices extremely important. It's also possible that belonging to such a social support group provides opportunities for better general communication skills, which might be associated with better communication about safer sex practices. Also, individuals in this sample may have learned to incorporate safer sex behaviors into their activities without the need to disclose their HIV status. The goal of communication about protective sexual behavior is not necessarily self-protective in the case of HIV-positive individuals; rather, such communication may be selfless in nature, stemming from a desire to protect others.

Disclosing one's HIV-positive status may contribute to improved psychological well-being if those disclosed to respond in a helpful manner. It is likely that a group of HIV-positive individuals could also provide a wide range of valuable resources, both physical and emotional. For example, HIV-positive gay men can provide information about treatment options, financial assistance, sick care, emotional support and reassurance that one is loved and valued within the gay community despite his HIV-positive status. HIV-positive gay friends can also provide empathy, familiarity and trust to someone with the same HIV status. Disclosure to individuals whose HIV-positive status is known or assumed does not, however, always help individuals develop the skills necessary to disclose HIV-positive status to individuals with an unknown or HIV-negative status.

Additionally, personal remarks on six questionnaires included comments about HIV-positive status disclosure, such as, "I think love must protect him; I'd love to be strong;" "I've told all but family, who have issues;" and about HIV, "I'd like to kill the fucker, but until then, I've learned to get on, getting on."

Disclosure is intimately related to how communities stigmatize or accept HIV and how individuals perceive themselves, their identities, and their roles within the community. The need to express thoughts and feelings about this experience was evident by the personal comments on the questionnaires. It appears that studies which assess HIV-positive individuals' experiences in a non-judgmental manner are welcomed and appreciated within the HIV-positive gay community.

Zoltan Nabilek is a doctoral candidate at the Illinois School of Professional Psychology and has worked in the HIV field for four years. Originally from Hungary, he organized social support groups and wrote the monthly feature "Thinking Positive" in a Hungarian gay magazine for two years.

1. Driskell, J. R., Salomon, E., Mayer, K., Capistrant, B., & Safren, S. "Barriers and facilitators of HIV disclosure: Perspectives from HIV-infected men who have sex with men." Journal of HIV/AIDS and Social Services, 7, 2, (2008):135-156.
2. Serovich, J. M."A test of two HIV disclosure theories." AIDS Education and Prevention. 13. 4. (2001): 355-364.
3. Serovich, J. M., Lim, J., & Mason, T. L. "A retest of two HIV disclosure theories: The women's story." Health and Social Work, 33, 1, (2008): 23-31.
4. Swendeman, D., Rotheram-Borus, M. J., Comulada, S., Weiss, R., & Ramos, M. E. "Predictors of HIV-related stigma among young people living with HIV." Health Psychology. 25. 4. (2006): 501-509.

Health Care Providers Must Respond To HIV-Related Stigma. 24/10/09

Healthcare providers can and must respond to HIV-associated stigma and discrimination, a review article published in the Journal of the International AIDS Society emphasise

Healthcare providers can and must respond to HIV-associated stigma and discrimination, a review article published in the Journal of the International AIDS Society emphasises.

“Stigma reduction in health facilities … has important implications for improving patient-provider interactions, improving quality of care, and creating a safe and supportive space for clients that can help them deal with, and in some cases challenge stigma from family and community members”, write the authors.

HIV and stigma

HIV is both preventable and treatable. However people with and at risk of HIV often experience stigma and discrimination. This can mean that they are deterred from using prevention, care and treatment services.

All too often, such stigma and discrimination is experienced in healthcare facilities. The authors describe this as “pernicious” and suggest “its physical and mental health consequences to patients can be damaging.”

Unfortunately, little attention has been paid to HIV-related stigma and discrimination in health care. This is especially the case for resource-limited settings.

The authors suggest that this lack of attention can be attributed to three causes:

Therefore, they outline in their paper the reasons why it is important to address real and perceived stigma in healthcare settings. They also provide examples of ways in which facilities in resource-limited settings have addressed stigma and discrimination.

A definition of stigma
UNAIDS defines HIV-related stigma and discrimination thus: “a process of devaluation of people either living with or associated with HIV and AIDS…Discrimination follows stigma and is the unfair and unjust treatment of an individual based on his or her real or perceived HIV status.”

How stigma and discrimination are manifested
Studies in Tanzania, Ethiopia, and India have shown that stigma and discrimination towards people with HIV can be manifested in a number of ways, including:

Such behaviour can have “potentially devastating consequences on care-seeking behaviour”, suggest the investigators, meaning that “stigma represents a major cost for both individuals and public health".

This can include avoidance of prevention, testing, care and treatment services.

Fear of stigma can mean that healthcare workers who are HIV-positive or at risk of HIV can be especially reluctant to access services because they fear the reaction of colleagues.

Tackling the causes of stigma and discrimination
Studies from around the world have revealed three ways in which stigma and discrimination can be immediately challenged:

“What is needed…is the political will and resources to support and scale up stigma reduction activities throughout healthcare settings globally,” conclude the investigators. They add, “given the detrimental effect of stigma on both individual health and wellbeing and public health outcomes, it is clear that healthcare managers cannot afford inaction any longer.”

Reference
Nyblade L et al. Combating HIV stigma in health care settings: what works? Journal of the International AIDS Society 12: 15, 2009

How Stigma Kills. 12/09

People don’t want us to: Cut their hair, Serve them food, Babysit their children, Marry them Or be their friend.* Why AIDS stigma is as deadly as the virus itself.

Defined as “a mark of shame, disgrace or discredit,” stigma has long plagued HIV/AIDS. It is one of the defining characteristics of the disease, differentiating it from its biologically-parallel-but-socially-altogether-different retroviral kin: hepatitis, herpes and human papillomavirus (HPV). While we can chirpily discuss vaccinating our children against HPV as we choke down our Cheerios, and we can sit comfortably in front of commercials for herpes drugs, the mere whisper of the word “AIDS” often causes all polite conversation to cease.

We’re not imagining this. In 2007, amfAR, the Foundation for AIDS Research, commissioned Harris Interactive to conduct a study among the general American public seeking their attitudes about women living with HIV/AIDS. The survey showed that the majority of Americans are uncomfortable around people living with the virus. More specifically, the study revealed that 59 percent of Americans are somewhat or not at all comfortable with having an HIV-positive woman providing them with child care; 47 percent of Americans are somewhat or not at all comfortable with having an HIV-positive woman serve them food at a restaurant, and 35 percent of Americans are somewhat or not at all comfortable with having an HIV-positive woman as their hairdresser. This study, which mined attitudes about HIV-positive women, flushes out that it is indeed the virus itself that makes people squirm. In other words, people don’t fear HIV because (as some suggest) they misperceive it to be a gay or a black disease; they fear HIV and the people living with it, period.

The study also revealed that the vast majority of Americans are not comfortable with the idea of having a romantic relationship with an HIV-positive partner. Eighty-seven percent of Americans are somewhat or not at all comfortable dating someone who is HIV positive, and 89 percent of Americans are somewhat or not at all comfortable marrying someone who is HIV positive. One in five Americans said they would not be comfortable with having an HIV-positive woman as a close friend. Ouch.

The results of a recent survey on poz.com about stigma showed that our readers’ perceptions of the general public’s attitude toward people living with HIV are spot-on. Eighty-eight percent of you said that your fear of being stigmatized has made dating/relationships more difficult (remember, 87 percent of the general public said they’re uncomfortable dating you), and 91 percent of you believe AIDS stigma prevents people from getting romantically serious with/getting married to you (89 percent of the general public agreed with you). That’s very close statistical mirroring.

Given that HIV-related stigma is as bad as we perceive it to be, it’s no wonder then that 65 percent of you said that HIV-related stigma has prevented you from disclosing to family members; 71 percent of you said it keeps you from telling coworkers; and 60 percent of you said you don’t tell friends because of fear of being stigmatized.

One statistic we found particularly disturbing in the Harris study was that very few Americans believe that HIV-positive women should have children. In response to the question, Should a woman with any of the following conditions have children?, fifty-nine percent said women with cancer should have a child; 47 percent of people said women with depression should; 37 percent said women with multiple sclerosis should; 20 percent said women with hepatitis C should; 19 percent said women with Down syndrome should; and 17 percent said women with schizophrenia should. Yet, only 14 percent of Americans said they thought women with HIV should have a child.

This points to a root cause of AIDS stigma: lack of education. Too many people still don’t have the correct facts about the disease. For example, women with HIV under proper medical care can usually have a child without passing the virus on and are likely to live long enough to parent the child. Since lack of information breeds fear and fear breeds stigma, one clear prescription for fighting stigma is renewed awareness and better education around the disease.

It would be one thing if stigma stopped with an attitude. If all it meant to be stigmatized was that some people didn’t like us, it would perhaps be manageable, albeit uncomfortable. But when stigma gets in the way of our survival, that’s another thing entirely. Thirty-four percent of you said that fear of stigma has prevented you from seeking care, treatment and support. And 19 percent of you said you don’t disclose to health care professionals because of HIV-related stigma, a fact that certainly compromises the level of care you are receiving. Imagine how many people don’t get tested for HIV because of stigma. It’s estimated that one in five Americans living with the disease is unaware of his or her status. And according to the CDC, it’s estimated that HIV-positive people who are unaware of their infection may account for 54 to 70 percent of all new sexually transmitted HIV infections in the United States. Seems clear to us that stigma is a barrier to individual—and public—health. Not to mention that 48 percent of you said fear of stigma has adversely affected your career. It’s harder to keep a good job and afford medical insurance and prescription drugs if you’re not performing at optimal levels at work.

But while much of the impact of HIV-related stigma is quantifiable, it is, arguably, those aspects of stigma not captured by statistics that prove the most devastating. As we went to press, more than 1,000 of you told us chilling stories of how stigma negatively affects your lives—breaking down your spirit and your will to live.

Only a small group of you spoke of how you fight stigma, standing proud and strong despite society’s desire to keep you down. Some of you have found the inner strength and resolve to rise up in spite of people’s fear and ignorance.

As a community of people living with HIV and as a society in general, we need to do a better job fighting stigma by reopening the dialogue about this disease and dragging the unseen facts and faces into the light. Because it is much easier to fear what we don’t know. (Interestingly, while 85 percent of you said that President Obama and his administration are not doing enough to combat stigma around HIV/AIDS, 78 percent of you said that the HIV/AIDS community itself is not doing enough to combat stigma.)

It's a chicken-and-egg conundrum. Stigma around AIDS will only dissipate when the world is safe enough for people with HIV to no longer fear disclosing. Individually, many of us living with HIV who have disclosed in POZ or in our lives have seen that people can be supportive and kind once they understand the facts around the disease. (Sixty-seven percent of you said that people treated you the same, post disclosure.) But 87 percent of you said that the current anti-discrimination laws do not sufficiently protect HIV-positive people from being stigmatized, which means that things must change before we can afford to show our faces and change the way the world sees people living with HIV—for the better.

Forty-nine percent of you said that HIV-positive people’s fear of being stigmatized is worse than the actual stigma. At POZ, we see repeatedly that this is true. For those who feel they are ready, and can safely come forward, speaking about having HIV can do much to erode the corrosive stigma that keeps us from good health. It bashes stigma when we show the world we have nothing to hide—and are nothing to fear.

STORIES OF STIGMA

The following are excerpts from some of the responses from readers to our anonymous survey about HIV-related stigma. We encourage you to post your stigma experiences as well.

I told a friend about my status while we were drinking coffee, and when I was done with the cup, he threw it out saying, “I will never drink out of that cup again.”

*

When I was first going on disability, I had a doctor who was doing the intake come in the room in full hazmat suit and mask and gloves. His nurse wouldn’t even let me face her. I had to sit at the opposite end of the exam table to talk to her—and face away.

*

I told [one] employer [about my HIV status] because I was out sick for four weeks. I will never tell another employer because I work total white collar and there’s no threat of blood [exposure]. I don’t volunteer for CPR training or participate in blood drives at work.

*

When I told a very good friend of mine (we used to camp beside each other every weekend), he cried and said he would stand with me, support me, be there for me. I have never heard from him again, not a call, not even a note or e-mail.

*

A friend in whom I was not interested romantically blurted out in front of a group of people that he could never become romantically involved with someone like me with HIV. My response was not to worry. I wasn’t interested in anyone with chronic bad breath like him, either.

*

A friend of a friend who knew I had HIV disinfected the entire house after I came to pick my friend up to go out. When I walked back in a few hours later to drop her off, I noticed the whole house smelled of cleaning products.

*

I feel the stigma is HUGE, and out of the fear that my children would face repercussions from teachers, friends [and] other parents, we have decided to not tell anyone.

*

I am a nurse by profession for 20 years. I told HR the day I found out my HIV status [and] was put on administrative leave immediately and not called back or offered another job. [I had] impeccable credentials.

*

Having hemophilia, I was hospitalized last year for problems not related to HIV. A couple of nurses’ bedside manner dramatically changed after they learned of my status. One actually never returned to my room. I was not spewing body fluids, so she was in no danger. She despised me for being positive.

*

A lot less of my phone calls are answered. People [who] I thought were [my] friends are too cowardly to stare something serious and life-threatening in the face—even if that means discarding me.

*

As a husband and father, I have not disclosed my status to anyone other than my wife and of course [my] health care provider.

*

All my Catholic friends whom I’ve know for 20 years all turned their backs on me, started making up lies in my community [and] attacking my character. I can’t show up in public any longer. No one will hire me. I can’t even volunteer. It feels more like they are carrying out some type of top-down orders to stigmatize people with AIDS. Probably from the Pope.

*

As someone living with HIV, I had people who never cared about my illness and worsen[ed] it. That traumatized me and [made me feel] as if I’m nothing. The more I became educated from health workers and support groups, the more I met others who comforted, understood and supported me.

*

I am basically unable to enter into any sort of romantic relationship. [I experience] quite a bit of social isolation—and it’s just so tiresome.

*

First, I’m black; and second, I’m gay. The worst stigma comes from my own community. Black people sometimes make me feel dirty. I just don’t understand, [since] this is killing our people. I could say more, but I’m getting very upset just saying what I have said already.

*

As a sexually active gay man in New York City, [I know] there’s still a lot of stigma against positive men. It’s tiring and depressing and makes me less willing to disclose my status. [I] even lie about it sometimes.

*

HIV stigma has ruined my life, my career, my family, my finances, my self-respect and my credit.

*

Formerly close friends suddenly lose touch; people don’t want to know you. I usually say, “It’s them, not me,” but it’s me who has to deal with it.

*

Doctors won’t accept me as a patient if I tell them up front that I’m HIV positive. Sometimes if I do get in with new doctors and they realize I’m HIV positive, they get mean or mad at me. People have made me wipe down everything I’ve used or touched with bleach. Living in a very rural redneck area of Florida, I take extra precautions to hide my status. Having gone to the local hospital ER [or to laboratories] for tests, I’ve had nurses drag other nurses or techs in to show me off like a sideshow at a circus. I see so much stigma here from the medical community it’s appalling. Dental care is nonexistent for anyone HIV positive in my county due to stigma.

*

I must either turn a blind eye or tune people out, because I can honestly say in the 20-plus years of being positive, I have never had a bad experience. And I am very open about my status. I have received kindness and support. And I have been able to educate others as a straight, white female (after they get over the shock first—folks don’t think people like “me” get HIV/AIDS).

*

For me it just feels like a very heavy weight I carry all the time. The variety of stigmas still attached to HIV makes the necessity to keep it hidden a burden that’s carried every day. Sometimes it gets very heavy. Rather than jeopardize [your] career, family, friendships and security, you keep it secret. That’s hard to do when you’ve lived an honest and truthful life.

*

I think some of the root cause of HIV stigma is criminalization of HIV transmission. We need more public awareness that HIV-positive people have sex too. I am an openly positive individual, and it saddens me that people living with HIV are so in the closet about it.

*

I had a job working for a well-known law firm in Chicago. When I disclosed my HIV status and my mental illness, they fired me. They said people would be scared to work with me. They said if I sued they would make my life miserable.

*

I got fired from my job as an administrative assistant at my church by my pastor. I lost my best friend of 20 years. I no longer trust anybody. I am in therapy. I cannot date. I sit in my house every day unless I have to go somewhere. My life is HELL.

*

I had a cousin tell everyone I went to high school with that I was positive. I did not go to my reunion.

*

Anonymous phone calls were made to my job [by clients], stating that they were no longer coming to the hair salon.

*

I worked in because I had AIDS. I continually struggle in the dating arena [because of] too much rejection. I know that I cannot get involved with a man with any sort of social status due to my HIV; they do not want to be associated with HIV.

*

Most, if not all, of my negative experiences have been with, by or in the presence of medical or dental personnel. After the disclosure, everything changes. They look at me like I’m from outer space, and the quality of their care reflects it!

*

I found out when I was five months pregnant. I went through a custody battle, and [my child’s] father tried to use my [HIV] status against me, but the judge would not allow it.

*

I dated a man once, several years ago. I kissed him. The next day I decided to share my HIV-positive status with him. He freaked out and said, “They should mark people like you, so the rest of us can tell.”

*

I think one of the main problems I’ve had with stigma comes from myself, being a heterosexual HIV-positive man. It’s hard for me to disclose my status for fear that I will be labeled gay. There still remains so much ignorance toward HIV.

*

I had to sue a former employer for discrimination because of stigma and fear of public disclosure of my positive status.

*

I was removed from direct patient care and placed behind a desk with a “made up” job to keep me busy and away from what I loved doing.

*

I have been asked not to share my water bottle with my 3-year-old nephew.

*

I have been fortunate in the last 10 years to have not received a negative response from anyone I had to disclose to. However, I am extremely selective about whom I share this info with.

*

I think I must be an unusual case, the exception to the rule, but in 15 years of living with HIV, I can think of only one time when I was “rejected” by a potential date because I revealed my status; otherwise, I have never experienced an obvious negative reaction to my disclosing.

*

I’ve been blessed in that I have not experienced any stigma. However, it might be that I was stigmatized and didn’t know it.

 Click here to download this story as a PDF

What HIV and AIDS Statistics Don’t Say: Stigma . 02/2011

AfroAIDSinfo
(This article was written in response to the AfroAIDSinfo consumer health informatics survey. Many participants requested information on stigma experienced by people living with HIV and AIDS.)

Introduction

Since the discovery of the human immunodeficiency virus (HIV) in the late 1970s, the spreading of the HI-virus resulted in a global epidemic.¹

According to the Global Report on AIDS, released by UNAIDS this year, the situation is still somewhat bleak.²

• There is an estimated 33.3 million people living with HIV/AIDS;
• 30.8 million are adults;
• More than 50% (an estimated 15.9 million) are women and girls; and
• 2.5 million are children.

Of the 33 million people living with HIV/AIDS, a mere 5 million are receiving antiretroviral treatment (ART). This constitutes a 30% increase of people on treatment since 2004. The result is a 19% drop in deaths among people living with HIV or AIDS.³

Furthermore, HIV prevention programmes are yielding the desired effect which is widely accepted. ⁴ In 33 of the most affected countries, the HIV incidence has dropped by 25% for the first time since its meteoric rise, it is generally accepted that the epidemic is now stabilising.⁵ In 1999, 3.2 million people became infected but in 2009 only 2.6 million were infected, which is a decrease of 19%.

In spite of the advances that were made as a result of prevention programmes and the increased access to ARTs, there is still one, largely forgotten problem that remains a reality, the stigma experienced by people living with HIV and AIDS.

Why is there a stigma associated with HIV and AIDS?
What is so amazing is that much has been done in response to the HIV epidemic and yet the associated stigma remains a reality. Ban Ki-Moon captured this concept as reported in the Washington Times, “Stigma remains the single most important barrier to public action. It is the main reason too many people are afraid to see a doctor to determine whether they have the disease, or to seek treatment if so. It helps make AIDS the silent killer, because people fear the social disgrace of speaking about it, or taking easily available precautions. Stigma is a chief reason the AIDS epidemic continues to devastate societies around the world.”⁶

There are various reasons why HIV-positive people experience stigma.⁷

• Since HIV and AIDS are presented as life-threatening, many people react to this in a very strong way;
• HIV-infection is mainly associated with socially unacceptable behaviour, such as prostitution, drug addiction and promiscuity;
• The largest number of people become infected through sex, bringing along a heavy moral baggage;
• In spite of all the many efforts to educate people, there is still a lot of inaccurate information about how the virus is transmitted. This leads to irrational behaviour on the part of the uninformed;
• The misconception still exists that HIV-infection is the result of being irresponsible;
• Some religious beliefs convince people to believe that becoming HIV-positive is a ‘punishment’ for their wrong deeds.

Stigma and discrimination against HIV and AIDS is to be found everywhere
People living with HIV and AIDS can be found in all walks of life, resulting in stigma and discrimination being experienced all over. the Global Report on HIV and AIDS (2010), published by UNAIDS, reports that at least 71% of all countries have ensured constitutional protection for people living with AIDS. Their basic human rights should protect them against any form of discrimination; however, these governments are sometimes guilty of exercising stigma.⁸ In the United Kingdom, for instance, a person can be prosecuted who has passed the HI-virus to another person, even if done unintentionally.⁹

In healthcare settings it is expected that people would know how the virus is transmitted. people who are living with AIDS are often reported to have been refused medicines or access to health facilities; having received HIV testing without consent and have even experienced a lack of confidentiality with regard to their HIV-status.¹⁰

In the workplace, people living with HIV may suffer from the stigma by their colleagues and employers, because of social isolation and being scoffed at. They also experience discriminatory practices, such as losing their jobs or being refused employment. This could lead to fear of employer’s reactions when their HIV-status is disclosed and causing the person living with AIDS to experience anxiety.¹¹

General knowledge has it that many countries have laws restricting the entering, staying or working in these places by persons who are HIV-positive. From December 2010, people living with HIV were subject to restrictions during long-term stays (more than 90 days) in sixty-five countries and of these, 18 also applied restrictions during short-term stays.¹²

However, the discrimination on a more intimate level is actually more often destructive. People living with AIDS often experience stigma in their neighbourhood and in the small family circle. Family members are the main support givers and caretakers of people living with AIDS; if their own family members turn against them they often experience avoidance, being banished from the family or even thrown out of the house. In this regard a Dutch survey of people living with AIDS found that stigma in families was a significant predictor of psychological distress.¹³

How does stigma affect a person living with AIDS?
The worst effect of stigma on people living with AIDS is fear of being discriminated against. As a result they are reluctant to disclose their HIV-status, which in turn will lead to an unwillingness of being tested, eventual exclusion from ARTs and ultimately a higher death rate.¹⁴

Research by the International Centre for Research on Women (ICRW)¹⁵ found the possible consequences of HIV-related stigma to be:

• Loss of income/livelihood forcing people to become economically dependent on others;
• Loss of marriage and childbearing options. In some societies this can lead to being ostracized;
• Withdrawal of care giving in the home; and
• Loss of hope and feelings of worthlessness.

Conclusion
Clearly HIV-prevention programmes are extremely important in the global response to HIV and AIDS, but coupled with this, ever-increasing educational programmes are needed to educate those living with AIDS about the disease and those who come in contact with these people. Energy, funds and programmes should target those with an inferior knowledge of the disease. This would assist them to know what the true dangers of HIV are, such as those associated with the transmission of the virus. Who knows, the UNAIDS might then be able to report on progress made on the decline of stigma and discrimination too. The key is to gain knowledge, since the truth will set everybody free.

Sources

1. AVERT: History of AIDS up to 1986. Accessed on 17 December 2010 and available at http://www.avert.org/aids-history-86.htm
2. UNAIDS:  Global Report on AIDS. Accessed on 17 December 2010 and available at http://www.unaids.org/documents/20101123_GlobalReport_em.pdf
3. Ibid
4. Ibid
5. Ibid
6. Washington Times, 6 Augustus 2008: Ban Ki-Moon: The Stigma Factor. Accessed on 17 December 2010 and available at http://www.washingtontimes.com/news/2008/aug/06/the-stigma-factor/
7. AVERT: HIV and AIDS Stigma and Discrimination. Accessed on 17 December 2010 and available at http://www.avert.org/hiv-aids-stigma.htm#refs
8. UNAIDS:  Global Report on AIDS. Accessed on 17 December 2010 and available at http://www.unaids.org/documents/20101123_GlobalReport_em.pdf
9. AVERT: HIV and AIDS Stigma and Discrimination. Accessed on 17 December 2010 and available at http://www.avert.org/hiv-aids-stigma.htm#refs
10. Ibid
11. Ibid
12. The Global Database: HIV specific Travel & Residence Restrictions. Accessed on 17 December 2010 and available at http://www.hivtravel.org/Default.aspx?pageId=142
13. Stutterheim SE et al (2009, 13th November), 'HIV-related stigma and psychological distress: the harmful effects of specific stigma manifestations in various social settings', AIDS 23:17 Accessed on 17 December 2010 and available at http://journals.lww.com/aidsonline/Abstract/2009/11130/HIV_related_stigma_and_psychological_distress__the.13.aspx
14. AVERT: HIV and AIDS Stigma and Discrimination. Accessed on 17 December 2010 and available at http://www.avert.org/hiv-aids-stigma.htm#refs
15. ICRW: HIV-related stigma across context: Common at its core. Accessed on 17 December 2010 and available at http://icrw.org/publications/common-its-core-hiv-related-stigma-across-contexts

Author: Pieter Visser
Reviewed by: Hendra van Zyl, Jean Fourie and Lundi Kwitshana
Contact: afroaidsinfo@mrc.ac.za
Date: February 2011

Last updated: 1 February 2011

Deaf People in Tough War Against HIV. 22/4/11

The problems facing deaf people in Tanzania are so complex that they create a hurtful circle

AllAfrica

Dar es Salaam — The problems facing deaf people in Tanzania are so complex that they create a hurtful circle. Besides, only a few people are aware of the critical situation surrounding people in the country, and even fewer understand the sign language (TSL).

This kind of situation tends to subject deaf learners to a number of serious problems due to lack of access to equal opportunities.

This in turn leads to other consequences in their life, including inequality in all spheres, namely linguistically, socially, economically, politically, culturally, as well as in other social services like education, health and communication.

Deaf people are usually marginalised and consequently subjected to unemployment and endless poverty.

Last week a team of journalists from various media houses visited Tanzania Association of the Deaf (Chavita) at Mtoni area on the outskirt of Dar es Salaam.

The trip was organised by the Association of Journalists Against Aids (AJAAT) and funded by the African Medical Research Foundation (Amref).

A Chavita member, Ms Upendo Mnasi, who is also deaf and HIV positive, admits that lack of education and the kind of lifestyle she used to live contributed to her present situation.

"It is hard to explain how my life style was and how it led me to get HIV infection. It is painful to tell it," she said.

She says she was born 41 years ago and discovered she was HIV positive in 1999. She decided to undergo HIV test after endless illness, which she could not know its cause.

According to Ms Mnasi, in the beginning she did not know the importance of testing because she could neither read nor write.

"I thank God, through TACAIDS I managed to break my silence and decided to know my status by voluntarily testing," she adds.

Gratefully, she says since then she has been getting the Anti retroviral drugs (ARVs) from the suggested health centre without a problem.

"The major problem we are facing is failure to get proper instructions from experts on how to administer the tablets. Most nurses and doctors who provide medicines are not capable of using sign language for deaf people living with HIV," she claims.

She adds that they prevent themselves from new infections by having safe sex but there are times when they reveal that they are HIV positive, people avoid them.

She, however, urges the government to support them because they are not only disabled but also HIV positive, a situation that adds misery to their lives .

Both deaf and HIV positive, Mr David David and Mwanahawa Hassan, residents of Sinza, say that a family is generally the source of support, encouragement and comfort during hard times of life, unfortunately many don't have that kind of relationship with their families.

They say that they have been together as a couple for a long time, but unfortunately are not blessed with children yet.

"When we got married our families never supported us, instead they rejected us; something which didn't end our relationship, we decided to carry on with marriage and live our life," they said.

According to Mr David, people with hearing loss are often treated as second class citizens, adding that sometimes such kind of treatment is intentional but much of this is due to lack of awareness by the general public.

He says this treatment is evident in many aspects of life and results in lack of things that are important to the deaf community.

Mr David says that services are not enough to sustain the majority of health facilities. But the biggest is lack of specialists in communication skills for the deaf and blind persons.

He expounded that given the opportunities deaf people can be productive members of Tanzanian workforce.

This can only happen if stakeholders and the government efforts to include deaf and other disability issues in economic planning.

Meanwhile, Chavita public relations officer Mr Msafiri adds that so far his organisation this year expects to form HIV/Aids association that would assist to improve the health of the deaf..

He said that the organisation aims to see Tanzanian community that recognises, accepts and cooperates with deaf people and ensures that they are not afflicted by poverty, injustice, segregation and any kind of discrimination.

"We thought of forming an HIV/Aids association because the deaf are human beings with feelings therefore it would be better to form an organisation which would strengthen and foster their life for national development," he says.

Mr Msafiri adds that the major part of the preparation is finished, and lack of funds and experts who could assist them to write proposals to donors so that the organisation can be approved is the remaining item which delays their move.

He says that the deaf do not lack information but the problem is inability to access information that makes them left behind in seeking information.

Although studies have shown that oralism has for many years failed to help deaf learners achieve their educational goals, the oral method has dominantly continued to be used in teaching deaf learners in schools.

Law Commission - submissions for the African Regional Dialogue

The Law Commission has called for submissions for the African Regional Dialogue regarding an opportunity for those affected by both disempowering and empowering laws and practices because of HIV/Aids, to share their experiences and knowledge in this regard.

The Social Aspects of HIV/Aids Research Alliance (SAHARA) seeks to facilitate a coordinated response regarding this issue.

We would appreciate it if you would circulate this call amongst persons or groups whom you know as have been affected by both disempowering and empowering laws and practices because of HIV/Aids.

Please refer to the attached document for further information.

We request that your contributions are directed to our SAHARA Coordinator relating to this issue, Mercy Banyini email: mbanyini@hsrc.ac.za by no later than 6 June 2011.

Looking forward to your submissions in this regard.

Regards

Dr Dimitri Tassioupoulos

Disfiguring Fat Compounds Stigma of AIDS. 13/4/11

That's not quality of life . . .We need alternatives

IPS - Inter Press Services

Beunos Aires - Since antiretroviral drugs became widely available in many countries, AIDS has gradually come to be seen more like a chronic disease. But the treatment that restored the hope of people living with HIV has posed a new challenge, which is generally played down by health professionals.

The problem is lipodystrophy or the redistribution of body fat. As the most visible and common side-effect of antiretroviral therapy, the disfiguring syndrome represents an added burden for people already suffering from stigma.

"The doctors say 'if your viral load is ok, the rest doesn't matter,' but if I can't be in a relationship, I don't want this life," Marcela Alsina, with the Buenos Aires Network of People Living with HIV, told IPS emphatically.

"I was one of those doctors who would say, when patients mentioned the issue of lipodystrophy, that it was a lesser evil, and at least they were alive," infectologist Mercedes Bisgarra told IPS. "But they would respond, 'yes, but I don't want to live like this'."

Bisgarra heads the AIDS programme in Tres de Febrero, an industrial district on the outskirts of the Argentine capital, which over 20 years ago was a pioneer in primary health care for people living with HIV.

The doctor said HIV-associated lipodystrophy was first described in 1998.

Symptoms are a swollen belly and breasts, and loss of tissue from the face, arms, legs and buttocks. Accumulations of lumpy fat tissue, known as a "buffalo hump", are also sometimes observed between the shoulder blades, and women may experience narrowing of the hips.

According to the Argentine Infectology Society, fat loss in the face affects 57 percent of men under antiretroviral treatment and 22 percent of women, and loss of fat in the buttocks affects 60 and 47 percent, respectively.

The facial wasting often caused by the drugs is similar to the effects of untreated HIV, commonly seen when the AIDS epidemic first broke out, Alsina noted. Their gaunt faces limit HIV-positive people in their relationships and job searches.

Among men, 68 percent lose fat on their legs and arms, while among women the proportion is 53 percent. But more women -- 74 percent -- accumulate fat in the breasts and abdomen, compared to 31 percent of men.

"When members of our network meet, we see that most of us are suffering from clear signs of the problem," said Alsina, who added that in recent surveys, lipodystrophy is mentioned as one of the most pressing concerns of people living with HIV.

Breast enlargement in men is an especially severe problem, for example.

Lipodystrophy is also seen among HIV-positive children and adolescents. "One 12-year-old boy told us that at school no one knows he has HIV, but they suspect he's sick because of his bony face. We have to tackle that stigma," the activist said.

Adults say they feel inhibited in their relationships, reluctant to have sex or even put on a swim suit. "No one abandons the treatment, but people suffer a lot, and we need alternatives," she said.

"Having HIV already throws a bunch of hurdles in our way," Alsina said. "If on top of that we can't find clothes that fit properly, we don't dare go to the beach, or we have a hump on our back, that's not quality of life."

Alsina, who is also coordinator of the Latin American and Caribbean Movement of HIV-Positive Women, says the issue has not yet been sufficiently addressed at the regional level. She says it is often ignored, and that there are other priorities.

Many countries are still working to finance universal free coverage of antiretroviral drugs. In Brazil there have been a few demands for aesthetic treatment, but by individuals, not groups, the activist said. In Spain, on the other hand, a campaign has been launched to raise awareness about discrimination against people with HIV, focusing on how it is aggravated by lipodystrophy.

Doctors themselves are often unaware of the impact the problem has on their patients' self-esteem. "The first thing we should do is raise awareness among health professionals, because they believe it is a cosmetic problem," Alsina stated.

She said there are alternatives that can help counteract the disfiguring effects of the drugs as they start to appear, such as exercise, injections in the face or buttocks, or surgery to remove excess skin, but that the issue is not on the agenda.

Bisgarra explained that in response to these concerns, the AIDS programme is trying to "adopt some treatments so the effects are gradual." But she said it is not yet known why some patients develop lipodystrophy and others don't.

"I think the activism of these networks to bring about research and discussion of the issue is a good thing, because the protease inhibitors and reverse transcriptase inhibitors do cause disfiguring in many patients," she said.

She pointed out that the drugs can also cause kidney damages, avascular necrosis (the death of bone tissue due to a lack of blood supply), and cardiovascular problems like heart attacks due to an increase in cholesterol and triglycerides.

"It's not just a question of fighting the virus, but also countering the side-effects of the medication," Bisgarra said.

To make the problem more visible, Alsina's network mounted a photo exhibition in conjunction with the Foundation for Studies and Research on Women (FEIM), in the Buenos Aires provincial Senate in the city of La Plata last December.

The exhibition includes photos showing the effects of lipodystrophy and personal accounts of people receiving antitretroviral therapy. "I learned to live with the virus, now I have to learn how to live with the body that the pills have given me," says one patient whose name is Carmen.

HIV Positiive Group Uses Music to Fight Stigma. 10/4/11

Music has been used as one of the tools to raise awareness about AIDS in Zimbabwe

AllAfrica

Music has been used as one of the tools to raise awareness about Aids in Zimbabwe but there are no prominent artists who have gone public about their positive status.

However, this is likely to change with the birth of Yamurai Support Group from Harare's Dzivarasekwa Extension, which is preparing to storm Zimbabwe's music scene with a new album.

Rebecca Chule, the group's chairperson said their debut seven-track album would be ready by month-end.

"Currently we have five songs and we are working on the last two tracks. We are very positive that by end of April the album will be out," she said.

Chule is one of the pioneers of the group, which she joined in 2009 and they have been using music to fight stigma and discrimination.

She said initially HIV-positive people were very shy to join but membership had since risen to 36.

"Some people who are not HIV-positive are even willing to join us," Chule said.

"We can safely say we enjoy support from across the social divide and the release of our album will be a major breakthrough."

Before venturing into music, the group was into gardening and mushroom growing. The projects are still running to supplement the group's income. An upcoming musician, Anderson Mamimine, is assisting the group with vocals as well as writing songs.

"The group is devoted and since I started working with them they have shown commitment as they always follow instructions," Mamimine said.

"I believe the group will reach greater heights if they continue with their team spirit. Since we started all the members have been attending practising sessions except on occasions when they fall ill."

The group has recorded songs such as Shout, which talks about challenges faced by HIV-positive people, Thank You, Child Abuse and Yesterday, highlighting the impact of climate change.

Am I Safe Here?: How People with HIV/AIDS Perceive Hidden Prejudices in their Communities. 3/3/11

People with HIV/AIDS felt the most need for secrecy in communities where people felt more social and less personal pressure to avoid being prejudiced.

People in marginalized groups, such as the disabled or racial minorities, feel stigmatized—condemned, feared, or excluded—when other people stigmatize them. That’s obvious. But they can also feel stigma when nobody blatantly discriminates against them or says a negative word.

These folks aren’t paranoid, suggests a new study of HIV-positive people and their communities to be published in Psychological Science, a journal of the Association of Psychological Science. Rather, they’re picking up subtle clues from their communities.

“Society is changing when it comes to prejudice,” says psychological scientist Carol Miller, who conducted the study with University of Vermont colleagues Kristin Grover, Janice Bunn, and Sondra Solomon. “Most people don’t want to be prejudiced”—yet the culture teaches us bias, and despite ourselves, “sometimes we express it. “

In the effort to suppress prejudice, motives vary. “Internally motivated” people value tolerance and abhor stereotyping. The “externally motivated” respond to social pressure. In either group, bias can “leak out,” says Miller. But those who harbor more prejudice are more likely to experience anti-discriminatory norms as coercive, or “politically correct”—and want to disregard them.

In an age where blatant discrimination is rare, how might these motivations, expressed by communities, affect their potential objects? To get at the answer, the researchers assessed various communities for the social conditions that allow their members with HIV/AIDS feel safe—or not—to disclose their disease to others.

The team recruited 203 New Englanders with HIV/AIDS. Most were men, and about half were gay or bisexual; they’d lived with the disease an average of 11 years. The participants answered 19 questions assessing their experiences of “enacted stigma” (for instance, “I have lost friends by telling them that I have HIV/AIDS”) and their “disclosure concerns” (“I worry that people who know will tell others”).

Within the next eight weeks, the researchers randomly selected about 12 adults from each of the communities where the participants with HIV/AIDS lived and interviewed them by phone about community life and their feelings and behavior toward people with AIDS. The questions were designed to tease out whether the respondent’s motivation to act tolerantly was internal or external. The results were tabulated to characterize each community the same way.

The people with HIV/AIDS experienced few overt acts of discrimination, the study found. Yet many still were reluctant to reveal their disease.

What made the difference? It was the community’s source of motivation. People with HIV/AIDS felt the most need for secrecy in communities where people felt more social and less personal pressure to avoid being prejudiced.

The study has implications both for communities and their members with HIV/AIDS. “If we want to change community attitudes, we need to be careful,” says Miller, “Because if all we do is make people feel pressured, we might be making it worse instead of better.”

As for the people with HIV/AIDS, Miller doesn’t second-guess their anxieties. Still, she suggests, risk-taking can yield rewards. “If in fact you are in a community where people would like to accept and support you, if you don’t disclose, you never give them the opportunity.”

Marriage & Family : Stigma And Discrimination (Gender Dimension to HIV/AIDS). 3/11

Violence undermines the ability of women and girls to negotiate safe sex practices or to leave partners who are engaged in high risk behaviour

Gender based violence is widely acknowledged as a key risk factor for HIV/AIDS. Violence undermines the ability of women and girls to negotiate safe sex practices or to leave partners who are engaged in high risk behaviour. A study among women in antenatal clinics in South Africa found that women reporting violence were 505 more likely to be HIV positive.

Crying At Her Doorstep
Jay sat at the Mansion Doorstep and cried aloud. “Look at me, a living corpse. I am lonely, rejected, dejected, humiliated and isolated. What am I living for? My life is worthless. I cannot touch my son; I can no longer live with my husband as couple.” She lamented as she sobbed bitterly.

Tijan Comes Home
Tijan found Jay at their doorstep. “What are you doing here?” He barked.
“The househelp refused to open the door for me.” “Didn’t I tell you or did you not understand language? You cannot enter the mansion. We are Hiv neg while you are positive. I don’t want you infect my son with your diseased hands. Wait for me at your Quarters or better still ring me, you get my number if you need anything.” Tijan callously explained.
Jay quietly got up and headed for the Boys’ Quarters. She is shattered.

At Aziz’s House
Some police officers arrived with morose faces and asked for Aziz’s wife. Mam Kumba just came from the market and announced herself.
“Here I am! What is the problem? Is everything alright?”
“Madam! Your husband was involved in a fatal accident!” The officer announced. “What!” Mam Kumba fell on the ground. The officers were shocked. They applied first aid and helped revived her up.
“Madam! Are you okay? Gather yourself! Let us go to the Mortuary for you to help identify the corpse.” The officer ordered.
Mam Kumba was ushered into the car to go and identify her husband’s corpse. It was a sad moment.

Tijan Reflects On Jay’s Past Behaviour
Tijan announced to Jay about his six months Refresher Course. She became a bit apprehensive. “It’s okay. Time flies, within a short space of time you’ll see am here.” He said.

Tijan Comes Back
Tijan came back with flying colours. He is promoted to become the General Manager (GM) of his company.

Jay Changes Countenance
Jay is cool towards her husband when he needed her she gave him a sheath to wear. Tijan questioned her. “Are you not on family planning pills?” He asked.
“Yes, but I missed taking it and it can be dangerous. That’s why I insist on you putting on the sheath.” Jay argued.
“But I want another baby. Isn’t it what we agreed upon?” Tijan asked.
Jay was put in a corner but she was not sure about her status. She doesn’t want to infect her husband.

She Employs Another Tactic
When Tijan insisted to have intimacy with her she said. “ I am sick; another time sweetheart.”

Tijan Protests
“I cannot understand your behaviour since I came from my Refresher Course as you are avoiding me any time I need you, you refused my advances. What is it? Why are you avoiding me, don’t you want another child for me?” Tijan charged.
“No! No! Don’t say that Honey; it is not like that. It is only that my body is acting funny. I cannot understand it. I want to go to the doctor and have a thorough examination.” She said.
“Whatever! But you are no longer warm towards me.” Tijan posited.

Tijan Reflects
Tijan is ashamed and felt guilty of his treatment of Jay.
“Everyone makes mistake but my treatment of Jay is inhuman. Let me make amends before it is too late. I have already made a lot of blunder.”

Tijan Goes In Search of Jay
Tijan went to the Boys Quarters to apologize to Jay about his behaviour.
He knocked hard at the door but it was locked. He called Jay aloud but no answer. “What is happening? Is she in?” “Bang! Bang!” But still no reply. Tijan got a hammer and broke open the door. What did he see? Jay unconscious on the floor. Tijan exclaimed. “What! Oh no! You can’t do this to us. I am sorry! You cannot die Jay! You cannot! Hassum needs his mother.” He sobbed as he rushed Jay to hospital.

Jay Admits At The Intensive Care
Jay is admitted at the Intensive Care Unit. Tijan is heart broken. He was vindictive to punish his wife but he does not want her to die just to suffer for her infidelity.

At Hassan House
Absatou, Hassan wife discriminated against Aminata the narrator of the story. She poisoned Hassan’s mind against his sister.
“Our lives are in danger.” She told Hassan. “How?” Hassan asked. “Your sister goes to my kitchen and uses my utensils. She will infect them with her diseased hands. Let her keep away from my kitchen if there will be peace in this house.” Absatou posited.
“Aminata is my only kid sister. We are orphaned with two other brothers, Tijan and Salifu who stays aboard. She does not want to go back to the village. She came here for greener pastures. How can I send her away?” Hassan asked.
“I did not ask you to send her away; but said she should not enter my kitchen; period.” Absatou posited.

Hassan Confronts Aminata
“Do you want to destroy my marriage?” Hassan asked Aminata.
“How?” She innocently asked “What have I done?”
“My wife said you should not enter her kitchen or use her utensils. Why did you flout that?”
“I have given you enough money. Go to restaurants and eat there. I don’t what any trouble between you and my wife. You put yourself in your present state. Instead of going to school to learn you went after boys and men. Now you are infected with HIV and you want to destroy my home? I’ll not allow it.” Hassan lashed at Aminata.

Aminata Leaves
Aminata is dignified. She just packed her luggage and left Hassan’s house. Where was she to go? Tijan is hostile and has blamed Aminata for her status. Everywhere is blame, blame, and blame.

Hassan Reflects
“My wife is about to make me a father. I’ll not allow anyone to disturb that.” Hassan posited.

Jay At The Hospital
Tijan and Hassum went to the hospital to visit Jay. She was still in coma. Tijan prayed for her. He apologized. “Forgive me sweetheart. I was harsh to you. You are sick; I should have given you support and encouragement. HIV is a sickness anybody can get. Not only through intercourse but through blood transfusion or contaminated instruments. A Baby gets it through its mother. We should stop the name and shame. I have regretted my action. Please live to give me the chance to repent and change my ways. Our son needs his mother. I need back my wife. If you live, we will be as before, all compassing and loving. Please, don’t leave us darling, don’t.” Tijan sobbed.

A Sign Of Life
Jay shook her fingers. Tijan jumped and went to call Doctor Nabou.

Jay Asks For Forgiveness
Jay opened her mouth and feebly spoke to her son. “Hassum, my son, forgive me for my infidelity. I am sorry. Take care of yourself and always pray for me.” Then she turned around and died.

Hassum Shakes Jay
Hassum shook his mother. “Wake up mom! Wake up!” Hassum kept shaking his mom.

Tijan Comes Along With Doctor
Tijan came along with Doctor Nabou. She thoroughly checked her heart, her pulse and paused. Tijan shook her. “What is it Doctor? Jay shook her fingers. What is it? Are you not speaking?” “I am sorry!” Doctor said. “Sorry about what?” Tijan asked with agitation.
“We have lost her.” Doctor announced. “No! No! We can’t. I saw her shook her fingers. She cannot die and leave her small son behind. We need her. Allah is punishing my transgression. I have made amends. Don’t go Jay! Don’t go!” Tijan wept bitterly in shame and regret.
“I killed my wife! Stigma and Discrimination killed my wife.” He wept. The News devastated him but it was too late. Has he learned from his attitude?

HIV Ruling a Warning to South African Employers. 20/2/11

Positive staff on a wellness programme take sick leave less often than their HIV negative colleagues

A Labour Court judgment in favour of an award-winning horse-riding instructor dismissed by his employer for being HIV positive is a warning to employers “who allow prejudice to cloud their judgement”, a labour law expert said on Sunday.

Johan Botes, a director in the employment law practice at the Cliffe Dekker Hofmeyr business law firm, said the case was a reminder for employers who sought to disguise “impermissible reasons” for dismissal.

“While it is true that an employer may rightfully demand that its employees fulfil their contractual obligations, employers should not hide behind such requirement when facing issues of discrimination,” he said.

The case relates to the unfair dismissal of Gary Allpass, 48, by Mooikloof Estates in Pretoria, which owned an equestrian centre.

Mooikloof Estates, which has since sold the centre, was ordered to pay Allpass a year's salary and cover legal costs of the action he brought against them.

Handing down judgment, Judge Urmila Bhoola noted that the dismissal of employees because of their HIV status was widely acknowledged as discrimination unless the employer could show that being free of HIV was an inherent requirement of the job.

Botes said the Labour Court and Labour Appeal Court had come down hard in the past, “as it did in this judgment”, on employers seeking to disguise impermissible reasons for dismissal.

“Whether the issue is the HIV status of an employee or the employee's trade union affiliation, employers should expect no leniency from the courts where the true reason for the dismissal of the employee is one that is prohibited by law, which the employer seeks to disguise by dismissing the employee for an ostensibly fair reason,” Botes said.

“In the current case, the employer intended dismissing the employee for misconduct relating to his alleged dishonesty at the interview.

“The court rejected the employer's testimony in this regard and held that it was clearly not the true reason for the dismissal.

“The employer's discomfort with the employee's HIV status and its concerns about his health as result of his status was found to be the real motivation for the employee's dismissal.”

Meanwhile, a case study concluded by absenteeism management specialists CAM Solutions (CAMS) on the impact of HIV/AIDS on absenteeism and productivity at a manufacturing company found that HIV positive staff on a wellness programme were absent from work less often than employees who were HIV negative.

The case study proved that for every one percent reduction in absenteeism, there was a corresponding productivity increase of four percent.

“This study clearly suggests that companies with wellness programmes in place are improving not only their entire absenteeism rates (and therefore their productivity) but also the health of their employees, said CAMS chief executive Johnny Johnson.

A total of 621 employees were exposed to the study.

Johnson said that the research concluded that the confirmed HIV positive employees not on a wellness programme exhibited an absenteeism rate - calculated by dividing the number of days employees are absent by the number of days they are supposed to be at work - of 3.86 percent.

Those with confirmed HIV negative status exhibited an absenteeism rate of 3.21 percent during the same period.

“HIV positive employees who are on a wellness programme demonstrated an absenteeism rate of only 2.56 percent - the lowest in the study.

“We can therefore conclude that HIV positive staff on a wellness programme take sick leave less often than their HIV negative colleagues,” Johnson said.

Johnson said staff on a wellness programme benefited from antiretroviral drugs and other medical attention as well as from receiving nutritional supplements to boost their immune systems.

“The fact that they are so well-cared for also means that they are probably more motivated to go to work because their employers are making a significant impact on their quality of life by offering them the tools they need to improve and maintain their health.” - Sapa

Justice for HIV-positive Man. 17/2/11

Gauteng man who won a case of discrimination and unfair dismissal against his former employers

Health-e

A Gauteng man who won a case of discrimination and unfair dismissal against his former employers in the Labour Court, in Johannesburg, says he hopes the ruling will encourage other HIV-positive people who are being discriminated against by their employers to come forward. The court ruled in his favour yesterday, stating that he was unfairly dismissed by his employer because of his HIV status.

Gary Allpass says he feels vindicated by the ruling. “I’m happy that we won the case. I cannot believe that people still discriminate in this day and age. HIV is a sickness that you can manage. It is not a big issue anymore, but people are still backwards about their thoughts”, he said after judgement on his case was handed down.

 Allpass has been living with HIV for 20 years now and has never fallen ill nor has he been unable to work because of his condition. He says he is pleased with the Labour Court’s ruling and hopes that other HIV-positive people can be encouraged to make in-roads when fighting discrimination.

“I have always been open about my HIV status and I hope this will encourage other people to be open about theirs. Having brought the media here, I am hoping it will make them realise that if we can get more people coming to fight for their rights, it might take away that stigma. I have had enough of fighting this stigma with my career, but I haven’t given up”.

He says he was dismissed from his workplace two years ago immediately after his former employer discovered that he was HIV-positive. He worked as a horse-riding instructor and stable manager for Mooikloof Equestrian Centre at the time.

“Two years ago I was called to meet with my manager, Mr Malan, and he was angry with me and he told me I am being dismissed for the fact that I had HIV. He told me I had to pack my bags and leave the premises immediately. And I refused to go because I had my belongings in the house which they gave me. Then, a few days later they man-handled me off the premises”, Allpass recalls.

He then took the matter up and challenged his former employer in the Labour Court. He was represented by Section 27 and Webber Wentzel Attorneys. During cross-examination Allpass’s former employer claimed that the dismissal was not due to his HIV status but a ‘breach of trust’ because Allpass had not disclosed his HIV status during the initial job interview. The respondents were not present in court.

In her judgement, Judge Urmilla Bhoola said the respondents had to pay for legal costs incurred by Allpass as well as remuneration for the next 12 months.

Meanwhile, human rights organisation, Section 27 has hailed the ruling, saying it sends a clear message that HIV-positive people cannot be discriminated against. Director of the organisation, Mark Heywood, has described it as another break-through for people living with HIV/AIDS.

“The message is that you cannot discriminate against people with HIV.

 The second message is that people with HIV should know that the law protects them and that they should come forward and seek the protection of the law because if they go to court and their case is clear, they will win in court and the employer will be forced to pay compensation or legal costs”.

He says they hope the judgement will push more employees who are in the same situation to also come forward.

“We know that this is still going on at a large scale and it is not happening so much in the big companies, but these little employers where there is about five to 10 employees. Very often, those employers pay scant regard to labour law and scant regard to rights. The significance of this judgement is that it concerns a small employer and that the judge has said she doesn’t buy people who come and invent excuses after dismissal to try justifying what was in reality HIV infection”, says Heywood.

Advocate Adila Hassim says the case highlights two key issues facing South Africans today.

“The key message is that even though we’ve come far in South Africa and with the great legal framework that we have and fantastic protection of rights, there is an inability for people to claim them. Two reasons are that most people are not aware of their rights, but in this case our client was fully aware and sought legal help. The second part is the inaccessibility of lawyers. If you cannot access legal services it’s unlikely that you will see your claim going all the way. Without ability to do that, there is insufficient pressure on the smaller employers in these circumstances to change their practises”.

Section 27 urges people who feel that they have been discriminated against to seek legal help, in spite of the fact that they might not have money to pay lawyer fees.

Life Insurers 'Stigmatising' HIV-positive Customers. 4/12/10

Insurance firms accused of loading premiums for HIV-positive people and living in 'dark ages'

Guardian UK

Many life insurers are "stigmatising" people who are HIV-positive by refusing to offer them life cover or loading premiums to unaffordable levels, it was claimed this week.

Compass, a firm of financial advisers that offers specialist advice to gay and HIV-positive communities, said its research had found that eight of the top 12 UK insurers said they did not accept applications from HIV-positive people.

When it submitted a test case to the four insurers that said they did accept applications, two – Scottish Provident and Fortis – declined it altogether, said Chris Morgan, marketing manager of the Devon-based firm.

Of the other two companies, Zurich loaded the premium so much the customer would have to pay around £220 per month, almost double the £116 that Prudential would charge, he added.

The test case was that of a 30-year-old non-smoker, seeking £250,000 of life cover for 10 years, and was chosen because he has one of the best blood cell counts and "viral loads" – a measure of the severity of a viral infection – of any client Compass has represented.

Morgan said Prudential had loaded its premium, too, but at least it was offering "useful cover at a realistic price".

Early last year, Prudential became the first mainstream insurer to offer life cover to people with HIV. Since then, a few other companies have made tentative steps into this new market.

Morgan said: "Some of our findings and answers received from insurers are completely worrying. It is apparent the majority are still in the dark ages and attaching a stigma to HIV." He added that his firm recognised insurers had the right to decline applicants on medical grounds, but it felt they were not dedicating enough attention to this developing market, and taking the needs of HIV-positive people seriously enough. "Either companies are avoiding the issue by not offering cover, or offering completely inadequate, overpriced products and services."

Groups such as the Terrence Higgins Trust are campaigning to get gay men to come forward and take HIV tests. Paul Ward of THT told BBC Radio 4 this week: "If you are positive, you can start treatment and it's very effective. For someone in their 30s, diagnosed today, there is every likelihood they are going to live into their 70s." Yet worries over insurance are cited as one reason why many gay men in the UK do not test for HIV.

In a statement, Phil Brown, Zurich UK's life, underwriting and claims director, said that while it would be inappropriate to comment on individual cases, "of decisions made on HIV positives this year, approximately 85% have been offered terms". He added: "We assess each applicant on their own merits, considering the many aspects of risk involved including treatment, response to treatment and the applicant's compliance with treatment."

Scottish Provident said it was happy to assess applications from HIV-positive customers on an individual basis, and is most likely to offer terms where the customer has an "undetectably low" viral load, and a consistently high white cell count, has shown good compliance with anti-viral treatment, and needs cover for 10 years or less. But Morgan said: "We have submitted 10 pre-sales enquiries over the past three months and it eventually told us to stop sending because it was not in the position to offer any terms."

Fortis commented: "We do not automatically exclude cover for customers with any pre-existing conditions. However, we assess every case on a wide range of factors in arriving at decisions on whether terms can be offered."

AIDS-based Discrimination Still Rife. 30/11/10

Shortly after Allpass revealed that he had HIV, his boss dismissed him.

Health-e

The case of Gary Allpass, which is currently being heard in the Labour Court in Johannesburg, is an unfortunate reminder of the discrimination that people living with HIV and AIDS still suffer in the workplace.

Gary Allpass finally had his day in court on Monday this week. The Labour Court in Johannesburg is hearing Allpass’s application against Mooikloof Equestrian Centre in Pretoria, after the company dismissed him from his position as a stable manager in 2008. He was fired just two weeks after he had started working at the centre. This was after he had filled out a personal information form in which he had to disclose information about his health to his employers. Among others, Allpass revealed that he had HIV. Shortly after he sent back the form his boss, Dawie Malan, dismissed him.

“I disclosed the fact that I had had asthma, and that I had DVT and I had HIV. He told me that I had lied in my job interview and that I’ve been dismissed because I was severely ill because I had HIV. He blatantly said that I’ve been I was dismissed because of my HIV infection”, Allpass says.

When he dismissed Allpass, Malan said he had lied because when asked about his health in the job interview, he had said that he was in good health and didn’t mention that he has HIV. But Allpass did not have to disclose his HIV status, according to Section 27, which has taken up his case.

“I don’t think to have HIV means that you are not in good health. Judge Edwin Cameron from the Constitutional Court can ride the 94.7 Cycle Marathon – the 100 kms - in four hours. He has HIV. Does HIV mean he should say: ‘I’m unhealthy’, that ‘I’m ill?’ You’re not ill. You’re ill when you have pneumonia. You’re ill when you have Tuberculosis. You’re ill when you have an incapacitating disease. We know more about this virus, HIV, than almost any other virus in the history of medicine. We also know that is a treatable and an entirely manageable virus. That is why we don’t have in our law a requirement that if I have HIV, I disclose my HIV status to the employer at the point of employment. That is not required and it is not necessary”, says Section 27 Director, Mark Heywood.

Allpass has been living with HIV since 1992, which means that he had been carrying the virus for 16 years when he started working at the Mooikloof Equestrian Centre in 2008. At the time of his employment he was on AIDS treatment, had a healthy CD 4 count and a suppressed viral load. He was not incapacitated.

“I don’t believe that HIV incapacitates somebody from being a stable manager. In our country we’ve had a case in the highest court in the land – in the Constitutional Court – where it was claimed at one point that having HIV meant that you couldn’t be a cabin attendant on an aeroplane. So-called scientific evidence was brought forward to try to support that claim, and it was found to be insupportable. We had a case a few years ago where at issue was whether people with HIV could be soldiers. And again, very clever (in inverted commas) evidence was brought forward to say this is the most difficult job, and once again it was found to be unsupportable because what we’re talking about, with HIV, is a virus. We’re talking about a virus that is today a manageable virus. You should judge people in employment by their capacity to perform the inherent requirements of the particular job”, Heywood says.

He expressed regret that Allpass and people living with HIV in general are still being subjected to discrimination in the workplace.

As the case enters its third day today, Allpass has one desire.

“I look forward to a fair trial and a thorough ventilation of the issues that affect me and other survivors of HIV in general”, he says.  

Mooikloof Equestrian Centre was not available for comment.

Fighting HIV Stigma… Are we there yet? 30/11/10

"We must accept it because tomorrow it might be you, while it’s him today"

Health-e

South Africa has broken barriers to fight HIV/AIDS and the stigma attached to it, yet but the battle is not yet over. As World AIDS Day is observed almost 30 years on, Ayanda Yeni of Health-e News Service spoke to South Africans and asked them if they thought HIV was still a stigma.

It’s easy to say stigma is an issue of the past, but what do South Africans say?

“We are used to it now; I would accept anyone who disclosed their HIV status. You can’t judge somebody else. What if you are also sick?”

Others had opposing views.

“It’s still a problem for people….You have to accept someone who is HIV-positive because, obviously, they don’t like the fact that they are positive. We must accept it because tomorrow it might be you, while it’s him today”, said one.

 “Yes, there is still a stigma because we are not taking it serious. There are people who still don’t condomise. Not all of us can reveal our HIV status because we are scared what people will say”, said another.

From the views of people interviewed, it’s clear that there are still fears of victimisation because of HIV infection. The Treatment Action Campaign, TAC, says great steps have been taken to de-stigmatise HIV, however, there are still pockets of communities who have not yet come to terms with it. TAC Representative in the Gauteng region, Luckyboy Mkhondwane, says people are often judged once they disclose.

“For example, if someone decided to tell people about his status then people will say you had too many partners; you were not living a ‘proper’ life. Stigma is still there towards people living with HIV, but, gradually, we are seeing more and more HIV-positive people coming out and being bold, saying: ‘I don’t care who says what. If you reject me or judge, it’s up to you’. At the same time, you have those people who are afraid to come out and would rather lie about their illness and say they have diabetes, cancer, etc, because of the rejection people fear facing”. 

Stigma leads to victimisation, which often leads to discrimination. Mkhondwane, who is HIV positive himself, recalls an incident where he was discriminated against because of his status. He says he also lost many friends because he decided to be open about it.

“I was in a taxi and that very same month I did an interview with one of the magazines. Co-incidentally, two girls were reading that magazine in the taxi.

My picture was there, and so was my story. They noticed this is the person we’re reading about, so they moved to the row behind me. But I understand that people react differently to HIV. I have lost quite a lot of friends because I decided to be open about my status. People just stopped calling and visiting me. They just don’t want to associate with me. In the communities, when people know your status and they see you with a certain group of people, even those people are assumed to have HIV.  There is a perception that as friends, we’re doing the same things”.

Mkhondwane says his organisation, the TAC, receives many calls and visits from people who are being discriminated against at their workplace. He says there are many forms of discrimination in the workplace.

“For instance, people who are child minders, people who work in the food industry... We get calls from them saying after their boss found out that they were HIV positive they moved them from the kitchen to being a cleaner. Even though they won’t be straight with you and tell you that they are moving you from being a chef or waiter to being a cleaner because of your HIV status, they’ll make up an excuse. These companies are smart because they know the law and so they’ll rather demote you or move you to a position where you work in isolation”.

A matter between an employer and employee is currently before the Labour Court. The employee claims that he was dismissed after he disclosed his HIV status. He sought advice from Probono.org, a legal clearing house that assists people to get justice freely. Head of the General Law Department at Probono.org, Kisha Candasamy, tells more about the case.

“It is a matter related to a dismissal of an employee after he disclosed his HIV status. This matter is now being pursued by the attorneys. Section27 is also involved and they are now taking this matter to court because the employer is not backing down. Unfortunately, I can’t reveal the merits of the case but it was due to his HIV status”.

Candasamy shares another case that the organisation has intervened in.

“We’ve also got another matter where rumours started that she was HIV-positive, even though she wasn’t. What followed was rumours spreading, continuous discrimination, there was name-calling, and this was from the management down. It filtered right through the company. Eventually, this client had to leave this employment. She wasn’t dismissed, but she got to the point where she could no longer stand being in that environment because of the stigma and the discrimination that was taking place”, she says.

Candasamy says that stigma is still a huge issue that needs to be tackled. She urges people not to lose hope because there are ways to fight for your rights.

“People who are in this type of situation can contact us, so we can try and assist you or refer you to a different organisation.

Also, don’t forget that the CCMA is made readily available to you, so an employee can go directly there without going through lawyers first. This is definitely something people should pursue”, says Candansamy.

Groundbreaking Global Survey Indicates Most Gay Men Worldwide Cannot Access Most Basic HIV Prevention and Services. 29/11/10

As world looks toward new prevention technologies, majority of men who have sex with men report no easy access to condoms and lubricant

Oakland, Calif – A new survey of more than 5,000 participants worldwide indicates that the majority of men who have sex with men (MSM) globally find it difficult or impossible to access HIV testing, HIV counseling, free condoms and free lubricant. Released to coincide with World AIDS Day, the preliminary findings underscored the importance of universal access to HIV prevention and treatment, a central theme of this year’s World AIDS Day observance.

Initial analysis of the survey’s results indicates that fewer than half of MSM worldwide have access to even the most basic HIV prevention and services. Of all respondents, only 39 percent reported easy access to free condoms and barely one in four reported easy access to free lubricant. A full 25 percent said free lubricant was completely unavailable. Large percentages of men reported that it was difficult or impossible to access other essential services as well, including HIV testing (57 percent), HIV education materials (66 percent) and HIV treatment (70 percent).

Conducted by the Global Forum on MSM & HIV (MSMGF) in collaboration with Dr. Patrick Wilson, Assistant Professor at Columbia University's Mailman School of Public Health, the survey was carried out online in Chinese, English, French, Russian, and Spanish. Circulated through the MSMGF’s global networks and those of its partner Fridae.com, the survey closed with a total of 3,875 MSM and 1,009 MSM service providers participating – another 375 participants did not identify themselves as MSM or provider. Nearly three quarters of all study participants were from low or middle income countries.

“Since the beginning of the epidemic, it has been widely recognized that condoms, lubricant, testing and treatment, when combined with community-led behavior change and support programs, are the most reliable tools available in the fight against HIV among MSM,” said Dr. George Ayala, Executive Officer of the MSMGF. “More than 25 years in, it is inexcusable that MSM around the world continue to have such restricted access to these basic lifesaving resources.”

“With the excitement surrounding the promise of pre-exposure prophylaxis (PrEP), it can be easy to forget that we already have a rich selection of prevention measures that we know work right now,” said Patrick Hebert, Senior Education Associate at the MSMGF. “Today’s findings reinforce the fact that we can’t even get condoms and lube to more than half of MSM around the world. We must look seriously at barriers that prevent MSM in different country contexts from accessing these proven prevention tools.”

While reporting on levels of access to currently available HIV prevention tools and services, the survey also explored knowledge about emerging technologies like PrEP, which involves taking antiretroviral drugs before exposure to HIV in order to prevent infection. While men in North America, Western Europe and Australia reported more knowledge about emerging prevention strategies than men in Africa, Asia, the Caribbean, Eastern Europe, and Latin America, large numbers of men in all regions of the world expressed confusion about these technologies. When asked whether MSM should use PrEP to prevent HIV infection, 40% of respondents said “I don’t know.” This suggests a need for stronger communication and education efforts targeting MSM worldwide regarding these new potential options.

Regional differences also emerged regarding experiences of stigma and discrimination. On every measure of stigma related to homophobia, men in Africa, Asia, the Caribbean, Eastern Europe, and Latin America reported higher levels and harsher forms of stigma and discrimination than men in North America, Western Europe and Australia.

“Stigma and discrimination fuel the HIV epidemic among MSM and other high-risk populations,” said Othman Mellouk, Co-Chair of the MSMGF and Advocacy Coordinator of the International Treatment Preparedness Coalition (ITPC) for North Africa. “Stigma and discrimination undermine access to prevention and treatment programs by forcing MSM underground and away from services they may need. Without addressing the bigger issue of homophobia, we will have no hope of ending AIDS.”

The MSMGF is currently working with Dr. Wilson to complete analysis of the full data set and is expecting to release a comprehensive report in early 2011. This project is supported by a generous grant from the Bill & Melinda Gates Foundation.

HIV: Talk about It. 11/11/10

Dispel the myths around the condition which touches millions of South African lives.

Pretoria - Government is encouraging social dialogue on HIV and Aids to be the main focus this year's World Aids Day, to dispel the myths around the condition which touches millions of South African lives.

The day is observed annually on 1 December and a number of activities are expected to take place, which will call on every individual to take action against the scourge of HIV and Aids.

Instead of the usual celebrations, this year, President Jacob Zuma will be visiting Piet Retiet in Mpumalanga, where he will participate in a dialogue to engage community members and health care workers.

Cabinet members, including MECs, will also participate in social dialogue around the country on how to reduce new HIV infections.

Themed 'We are responsible', the World Aids Day 2010 addresses the collective responsibility of all South Africans to influence and support partners, family and community members to voluntary test for HIV and set an example by leading healthier lifestyles.

It also addresses the collective responsibility for the world to start contributing towards a common HIV response.

Mark Heywood, from the South African National Aids Council, has urged every individual in the workplace, schools and churches to take part in discussions on HIV infection.

"World Aids Day is an opportunity for us to take stock of where we are and re-energize [our] response to HIV," he said.

This year, government introduced the HIV, Counselling and Testing Campaign, which set out to get 15 million people tested for HIV by June 2011. To date, over 3 million have tested.

Heywood said the current number of people tested was a significant step forward, but stressed that 12 million more people needed to get tested. - BuaNews

Black Blood no Risk, After All. 14/10/10

Zero HIV transmissions emanating from its stock

Health-e

As the South African National Blood Service (SANBS) marked its fifth year of implementing its revised risk management model, which includes the use of black donors’ blood, the organisation has proudly announced that there have been zero HIV transmissions emanating from its stock, apart from one person who received Hepatitis-infected blood.

Following heavy criticism in 2005 for marginalising black donors, the South African National Blood Service (SANBS) had to regain the public’s confidence and it revised its risk management system. What followed was the introduction of what is called the Nucleic Acid Testing or NAT system, a very sensitive tool in detecting infections.    

“We started our routine testing in early October 2005. We have now tested over 3.6 million donations over the five year period. We did NAT testing in all the bloods. The significant improvement in blood safety you see with the number of transmissions we prevented is high”, says Ravi Reddy, the SANBS’s Chief Operations Officer.

Reddy stresses that over the years they have learned that it is critical to eliminate contaminated blood.

“The prevalence in our first time donors was from 4% to 7%. This is really in our blood donor population. By 1996, 1997 and 1998 up to 7% of the females were positive. That means despite all the donor exclusion questionnaires, 7 out of 100 females that donated to at the time, actually tested HIV-positive. Something had to be done”.

He adds that black donors were classified as a high risk category, thus their blood was rejected outright. Ironically, though, the blood service now wants to increase the pool of black donors.

“They are the future sustainability of SANBS. We were having an ageing white donor base. Up to 2007 we had got to less than 5% of our donors being black. By 2008, we increased to 11.5%, collecting 65 000 units in total. Now in 2010, 22.3% of our donor base is black donors. That is high. It’s has gone up more than four times since we started”, says Reddy.

Through the NAT system, SANBS is not only able to detect HIV, but also forms of Hepatitis, also known as HBV and HCV. In the five years that the system has been in place and after 3.6 million donations, only one sample of blood that reached a user was found to be contaminated with Hepatitis.

“It was a donor who had come back and we found him to be Hepatitis-B positive and we had to look back to see who received blood from that donor. The donor details were a 47 year-old white male. We had a negative donation from him in November 2008. His red cells were transfused to the patient in December 2008. And then we got a positive donation in January 2009, upon where our medial team started to do a look-back investigation. Three months later, we were then able to get the recipient’s sample in March 2009 and it was strongly HBV-positive”, says Marion Vermeulen, manager of the SANBS’s NAT system.

Standing Up for HIV-positive Immigrants. 13/10/10

It's two countries but it's the same thing. People here talk to people there and then everybody knows

New York - A new campaign aims to beat stigma and discrimination against HIV-positive Africans in New York by urging the wider population to show solidarity with them.

"For those living outside their home turf, the vulnerability that comes with being HIV-positive really exacerbates HIV stigma," explained Kim Nichols, co-executive director of the African Service Committee (ASC), an NGO that provides HIV and other health services to African immigrants in New York.

"There's a fear of deportation, a fear of being rejected by family and friends if they find out about their status that is just as real, if not more, because of the small community they are living in," she added.

According to the ASC, while effective treatment has dramatically changed the fight against AIDS, stigma and discrimination against HIV-positive people remain as strong as ever.

The "Choose to Stand Up" campaign calls on people to break the silence surrounding HIV stigma; share information by talking about experiences and concerns about HIV with friends and family; and to treat those with HIV with respect and compassion.

According to a 2008 study published by the US National Library of Medicine and conducted in several US states, up to 41 percent of diagnoses in women occurred among African-born individuals. Another study, published by Sociological Research Online in August 2010, found that Africans living with HIV in the US experienced "interpersonal, internalized and institutional" stigma.

Two countries, one stigma

When Ana* learned she was HIV-positive after moving to New York City, she wanted to return to her native Guinea, which she had left just four months before.

"I didn't want to stay here and die alone," the 29-year-old said. "But it was explained to me that if I stayed, I would get treatment, I could have children and I would have a better life."

The ASC helped Ana secure free HIV treatment. While her health has improved since she received her diagnosis in January, she still does not feel comfortable to "tell most people my secret".

"It's two countries but it's the same thing," she said. "People here talk to people there and then everybody knows."

The ASC, which works with approximately 4,500 HIV-positive clients, has tried to reduce stigma by integrating its HIV services into other health programmes.

According to ASC communications officer Stephanie Kaplan, taking a blood test that could be for HIV, or could just be for high blood sugar in a general testing facility, curbs client speculation about who is visiting the offices for what purpose.

The NGO tries to raise awareness of the availability of services to test and treat HIV. African immigrants often do not realize they are entitled to free HIV-related healthcare, regardless of their immigrant status.

"It's probably a barrier to learning one's HIV status, because if you don't know that there will be future coverage for your treatment, you are not likely to get tested," Nichols said.

Fear

It can take time to persuade some of the ASC's HIV-positive clients, of whom 80-90 percent are undocumented, to visit a health clinic or emergency room.

"People don't want to go to the hospital because there are fears of immigration [authorities catching them], yes, but it is also about fears of a disease that you don't want to share," said Rebekah*, 42, an HIV-positive Cameroonian ASC hospital escort, who helps immigrants navigate the health system.

Rebekah, who describes herself as "the luckiest person in the world" because of her immediate family's support, has another factor working in her favour - permanent residency.

In January, the Obama administration lifted a 22-year-old travel ban against people living with HIV/AIDS. According to Jim Alexander, a Washington DC-based immigration lawyer, the repeal signifies a more positive attitude towards HIV-positive individuals by the US government, but is unlikely to create new opportunities for HIV-positive illegal immigrants.

Alexander has represented African clients who gained asylum because of their fear of persecution resulting from their HIV status, homosexuality or transgender status.

"The number of people who actually go forward with cases is fairly small," he said. "We see people who are HIV-positive and decide not to pursue a case because the risk of coming forward for them is just too great."

The simplest option for many is to retreat and get on with a quiet life, as Ana has done, trying to send money home when she can and plan a future with her fiancé in Tunisia.

"I pray I can get my papers so I can travel so Tunisia to marry my fiancé," she said. "If somebody loves you even after you're sick, that's love."

Stigma Continues to Hold Back Darfur's HIV Fight. 13/10/10

She doesn't want people to know she is sick

Nyala - There are nine voluntary counselling and testing centres in the Sudanese state of South Darfur, but rather than risk being recognized at one of them, many people travel to a different state to seek HIV testing or treatment.

"My best friend is HIV-positive and every month travels to El-Fasher [capital of North Darfur] to get ARVs," a young tea seller living in Kalma camp for internally dispaced people (IDPs), South Darfur, told IRIN/PlusNews. "She could get the drugs in Nyala [capital of South Darfur] but doesn't want people to know she is sick - she hasn't told anyone else but me.

"I don't blame her; she thinks she would be excluded by the entire community and family if she disclosed her status," she added.

In 2007 an association of people living with HIV was created in Nyala to encourage HIV-positive people to exchange experiences and take the lead in advocacy, but three years on, only 25 people are members.

Ignorance

HIV prevalence remains low in Darfur - about 0.25 percent according to the most recent household survey, carried out in 2006. However, knowledge of the epidemic is very low; according to the survey, more than 46 percent of women aged 15-49 in Darfur had no knowledge about HIV prevention.

"The problem is many people still do not know enough about the disease, its methods of transmission or its consequences," Ahmed Dawoodd, HIV and sexually transmitted infections coordinator for the Ministry of Health in South Darfur, told IRIN/PlusNews. "Fear of the unknown generates stigma and this is why more awareness is needed."

According to a Sudan National AIDS Programme survey conducted nationally in 2009, 53.2 percent of respondents said they would not buy food from anyone with HIV/AIDS; 44 percent said they would not eat with an AIDS patient, while about 30 percent said they would prohibit a teacher with HIV from working or would remove their child from a school with an HIV-positive teacher.

The region's conservative culture means condoms are not publicly promoted or widely available, with locals generally only able to find them at health centres.

Small steps

In 2010, the joint African Union-UN Mission in Darfur [UNAMID] started providing logistical support to the Sudan National AIDS Programme (SNAP) to facilitate condom distribution to health centres in rural areas, but due to logistical constraints, remote villages and high-risk areas bordering neighbouring Chad remain out of reach.

UNAMID also recently held HIV education seminars for 1 50 prisoners in Zalingei jail in West Darfur.

The Ministry of Health and its partners have begun implementing awareness-raising programmes among high-risk groups; with the NGO Patients Helping Fund and other partners, they have trained 50 tea sellers and 20 truck drivers in Nyala and provided mobile voluntary counselling and testing to 300 local police officers.

In addition, the UN Children's Fund provides information and educational materials on HIV prevention to children, teachers, religious and community leaders, while the UN Population Fund has supported the State Ministry of Health and international NGOs in establishing youth centres and raising awareness on HIV/AIDS among Darfur’s camp communities.

"Progress has been made in fighting the stigma but [it's] only the tip of the iceberg," said Dawood

Woman Prevented from Cremating HIV+ Hubby. 5/10/10

1,200-strong mob gathered with some demanding Nil Madhab's body be taken away from the village

Times of India

Kolkata : Superstitions and prejudices related to HIV+ patients reared its ugly head on Monday when a West Bengal woman was prevented by villagers from cremating the body of her HIV+ husband for several hours.

Eight-year-old Debnath, the elder of the two sons of Barnali and Nil Madhab of Hanturia village near Howrah, finally lit his father's pyre around 3pm under heavy police protection after health officials failed to convince the villagers.

Nil Madhab, a truck driver was 32 when he was detected HIV+ three years ago. Since then, he has been undergoing treatment at NRS Medical College and Hospital, Kolkata. His condition gradually deteriorated. Last Sunday night when Barnali went to check out Nil Madhab's condition, she found him dead. "I tried to rub his hand but it was cold. I realized he had passed away in sleep. Since it was late in the night, all I could do was wait for dawn so that I could inform neighbours," Barnali said.

When neighbours learnt about Nil Madhab's death, they began gathering before his house, not to extend help, but confabulate on what to do. Soon, a 1,200-strong mob gathered with some demanding Nil Madhab's body be taken away from the village as it was "contaminated".

"I sought their help. Not only did they refuse to carry the body to the burning ghat at Memari, some of them said they would not allow his cremation there," said Barnali.

Arbitrary Arrests of Gay Men in China Violate Human Rights, Undermine Effective HIV Prevention and Treatment. 30/9/10

Experiences of discrimination have also been linked to increases in high risk sexual behavior among MSM

Oakland, California - The Global Forum on MSM & HIV (MSMGF) stands with the China HIV/AIDS CBO Network in strongly condemning the arbitrary arrest and mistreatment of more than 80 gay men at a popular Beijing park on Sunday night.  According to local activists, 20 police vehicles descended on the park and rounded up dozens of men, forcing them to be photographed, fingerprinted, and undergo blood testing at the local police station.  Such discriminatory actions are not only grievous violations of human rights,  they also work to seriously undermine efforts to effectively prevent and treat HIV among men who have sex with men (MSM).

Singling out sexual minorities for arrest and documentation sabotages efforts to control HIV by perpetuating an environment of fear and mistrust that inhibits open discussion and service-seeking behavior.  In such hostile conditions, revealing one’s sexual behavior and risk factors becomes a liability, driving many MSM outside the healthcare system.  Experiences of discrimination have also been linked to increases in high risk sexual behavior among MSM

Reports of forced blood tests are especially disturbing.  Forced testing is a violation of internationally recognized rights to security of person and to privacy.  Gay men and other MSM must have access to high-quality health services that provide for their specific needs.  The government should invest in friendly and competent services that MSM will actually want to visit, rather than conduct forced testing in an environment without any guarantee of counseling, referral, or confidentiality.

In China, MSM are 45 times more likely to be infected with HIV than the general population, and they accounted for roughly one third of new infections in 2007.  While homosexuality was decriminalized in China in 1997, authorities have continued to clamp down on non-governmental organizations, public gatherings and artistic events geared toward the gay and lesbian community.

“This is an unfortunate reminder that decriminalization of homosexuality is only the first step on the road to human dignity and effective health services for sexual minorities,” said Dr. George Ayala, Executive Officer of the MSMGF.  “Legal protection from discrimination and abuse is essential to ensuring the health and well being of most at risk populations.”

These events represent a major step backwards in China's response to its domestic epidemic.  Incidents like this run the risk of squandering the notable progress China has already made toward addressing HIV among sexual minorities. If authorities do not put a stop to these kinds of abuses, the country will miss a significant opportunity to model a more forward-looking, evidence-based and ultimately effective approach to this deadly pandemic.

The Science and Practice of HIV Prevention. 2/8/10

Prevention as a strategy to defeat HIV.

Prevention as a strategy to defeat HIV. The virus that causes AIDS. Two types of HIV are currently known: HIV-1 and HIV-2. Worldwide, the predominant virus is HIV-1. Both types of the virus may be transmitted by sexual contact, through blood, and from mother to child (either before or during birth, or through breast feeding), and they appear to cause clinically indistinguishable AIDS. However, HIV-2 is less easily transmitted, and the period between initial infection and illness is longer in the case of HIV-2. While some individuals experience mild HIV-related disease soon after initial infection, nearly all then remain well for years. As the virus gradually damages their immune system, they begin to develop opportunistic infections of increasing severity, including diarrhoea, fever, tuberculosis, pneumonia, lymphoma and Kaposi's sarcoma. HIV finally came of age at the International Acquired immunodeficiency syndrome. The late stage of infection caused by the Human Immunodeficiency Virus (HIV). HIV steadily weakens the body's defence (immune) system until it can no longer fight off life-threatening illnesses. These include infections such as pneumonia and certain cancers. AIDS Conference in Vienna last week.

The call for “an all-out, unprecedented effort towards HIV prevention” was made by Peter Piot and colleagues in The Lancet two years ago. At the beginning of the Vienna meeting, Julio Montaner's study of highly active antiretroviral treatment on HIV transmission in British Columbia, Canada, further showed that treatment and prevention are indivisible. As HIV intervention strategies, they are intimately connected.

To an overflowing conference hall and a standing ovation rarely seen at even this remarkably diverse meeting, Quarraisha Abdool Karim presented the main results of CAPRISA 004. This proof-of-concept study tested an antiretroviral microbicide (containing tenofovir) against placebo.

The 39 per cent reduction in HIV incidence was dramatic evidence that a microbicide can work. Although this was only a single study, the number of endpoint events was small, and the confidence intervals wide, this report is a turning point in HIV prevention science.

Perhaps less of a turning point—although we hope we are proven wrong—is a new UNAIDS High Level Commission on HIV Prevention. Launched in Vienna and co-chaired by Nobel laureates Francoise Barré-Sinoussi and Desmond Tutu, the Commission aims to lead “a global advocacy campaign between now and 2011 to build broad support for effective HIV prevention programmes”. There are reasons to be sceptical.

The Commission is replete with ex-political leaders with diminishing political power and influence—from Chile, France, and Botswana. There are celebrities—Magic Johnson—and private-sector leaders too. All busy people whose time commitment to the commission one might reasonably question.

There are commissioners one can have confidence in—Vuyiseka Bubula (General Secretary of the Treatment Action Campaign in South Africa), Irene Khan (a human rights expert), Peter Piot, and Mechai Viravaidya (Mr Condom, from Thailand).

The scientific advisory panel is chaired by the writer and journalist Laurie Garrett. What the products and certain condition, capability, or numerical measure which, when recorded, collected, and analysed, makes complex concepts more readily measurable and allows managers and evaluators to compare actual programme results with expected results.">indicators of success for the commission will be remain unclear.

What AIDS. The late stage of infection caused by the Human Immunodeficiency Virus (HIV). HIV steadily weakens the body's defence (immune) system until it can no longer fight off life-threatening illnesses. These include infections such as pneumonia and certain cancers.">AIDS 2010 seems to have shown is that the science of HIV prevention is now beginning to yield major successes. Whether the AIDS. The late stage of infection caused by the Human Immunodeficiency Virus (HIV). HIV steadily weakens the body's defence (immune) system until it can no longer fight off life-threatening illnesses. These include infections such as pneumonia and certain cancers.">AIDS community has the right strategies to translate those successes into policies remains to be seen.

Ugandan Study Shows why Human Rights are Central to HIV Prevention with African Men who have Sex with Men. 22/7/10

Men who have sex with men who have suffered homophobic violence or abuse are five times more likely to be HIV-positive than other men

AIDSMap

In Kampala, Uganda, men who have sex with men who have suffered homophobic violence or abuse are five times more likely to be HIV-positive than other men, Joseph Barker told the Eighteenth International AIDS Conference on Tuesday. Just under 40% of men had ever been physically abused, four out of ten had been blackmailed at some point, and a quarter had been forced to have sex.

Human rights for men who have sex with men in Africa has been a major theme of the conference. Attention has been drawn to laws criminalising same sex activity, police harassment, stigmatising media reporting and denial of healthcare. Researchers and activists have debated the best ways to advance the human rights of men who have sex with men and other marginalised groups.

In fact, Uganda is a country that has been repeatedly cited in these discussions, with particular reference to a recent backlash against men who have sex with men. As well as retaining colonial laws against sex between men, the Ugandan parliament is currently considering an 'anti-homosexuality' bill that proposes the death penalty for sexually active HIV-positive gay men. Parliament is also considering a separate HIV law which would undermine the human rights of people at risk of HIV infection. In general, homosexuality is socially stigmatised in Uganda and the issue is politically charged.

Men who have experienced homophobic violence or abuse are five times as likely to have HIV as others

In order to better understand the Ugandan HIV epidemic, researchers have been conducting studies with six ‘most at-risk populations’, one of which is men who have sex with men.

Owing to the hostile social environment, men who have sex with men can be difficult to reach. The researchers therefore used respondent-driven sampling in order to recruit research participants. This is a modified form of snowball sampling – an initial set of respondents recruit people they know, who then recruit other people they know, and so on. A mathematical model is then used to weight the sample to compensate for non-random recruitment patterns, so the results should be less prone to bias.

The survey began in May 2008 and only a few weeks later LGBT activists were arrested at an HIV conference in Kampala. Recruitment slumped at this point, but did recover by July and August. When a wave of arrests and alleged police abuse occurred in September recruitment slumped once again, never to fully recover before the survey closed in April 2009.

Despite these incidents, the researchers were able to recruit 303 men who had had anal sex with a man in the previous three months. Those participating were predominantly young (50% under 25), with a median of eleven years of schooling, and almost all were Ugandan.

To protect confidentiality, no names or contact details were collected from participants (they were identified with a number and a fingerprint). Information was collected using a self-completion computer survey (ACASI), in either English or Luganda.

The vast majority (78%) had had sex with a woman at some time; 29% had fathered children; and 16% were currently living with a female partner.

There was often a mismatch between the sexual orientation terms that men most identified with and their reported attraction to men and women:

-Whereas 56% identified with ‘gay’ or ‘homosexual’, 70% said they were attracted mostly or only to men.

-37% identified as ‘bisexual’, but 12% were attracted to both men and women.

-7% identified as ‘straight’ or ‘heterosexual’, while 19% were attracted mostly or only to women.

Commercial or transactional sex was common: 42% had ever sold sex to a man, and 25% to a woman.

Whereas overall HIV prevalence amongst adult males in Kampala is 4.5%, it was 13.7% in this sample.

Men often had inaccurate perceptions of their own HIV status – only one in ten of those with HIV were aware of the fact. Moreover, one in ten of the whole sample thought they had HIV when in fact they were HIV-negative.

Men also lacked basic information about HIV transmission risks. When asked whether insertive or receptive anal sex was riskier, 11% answered that neither activity posed a risk. Only 11% correctly answered that receptive sex is riskier.

One quarter never used condoms. Condom use was higher with male partners than female partners; higher with steady partners than casual partners; and lowest of all with commercial sex partners. Most men used lubricants although these were very frequently oil-based.

The researchers wished to identify the demographic or behavioural characteristics that were most strongly associated with HIV infection. In multivariate analysis, factors such as condom use or numbers of partners were not significantly associated with having HIV. In fact, only two factors were: age and homophobic abuse.

Men aged 25 or over were four times more likely to have HIV (odds ratio 4.3, 95% confidence interval 1.5 to 12.8). Amongst men over 25, HIV prevalence was 22.4%.

Men who had ever experienced violence or abuse because of their sexuality were five times more likely to have HIV (odds ratio 4.8, 95% confidence interval 1.8 to 13.1). Of the whole sample, 37% had been physically abused at some point, 37% had been blackmailed and 26% had been forced to have sex.

Advancing the human rights of men who have sex with men

Speaking earlier in the week, Joel Nana of African Men for Sexual Health and Rights noted that countries such as Tanzania, Kenya, Namibia, South Africa and Nigeria have in recent years incorporated men who have sex with men in their national HIV strategies. While strongly welcoming these advances, he also said that men need more than narrowly defined HIV prevention work.

 “The life of men who have sex with men doesn’t only revolve around health or the lack of health,” he said. “There are other issues such as extortion, harassment, expulsion from schools, unlawful arrest and detention, disownment by families and economic disenfranchisement that deserve equal attention.”

A number of speakers commented on countries where there is a mismatch between sometimes supportive health policies and an extremely hostile social and legal environment. Some attributed this to governments making cosmetic changes to obtain health funding from international donors. Others suggested that activists cannot limit themselves to working with ministries of health, but also need to find allies in their ministry of justice. The lack of access to justice can be as problematic as the lack of access to healthcare.

An argument that was brought up in session after session (and not just in those concerned with men who have sex with men) was whether strengthening the rights of disenfranchised groups should be justified for its public health benefit, or because they are fundamental and universal human rights.

Speakers recognised that framing the issue in health terms could sometimes make strategic sense – it can be a way of getting policy makers to pay attention to the issue. But treating human rights instrumentally, as a means to an end, could limit the extent to which rights are truly advanced.

It can also leave a space open for other actors to propose alternative public health policies (such as coercive or compulsory testing), which impinge on rights.

The human rights lawyer Anand Grover said that HIV provides a possibility to push human rights forward. He said it wasn’t an either/or choice between discussing health and discussing human rights – both arguments should be put forward together.

Law reform matters, Jeff O’Malley of the United Nations Development Programme said, and improvements in law enforcement matter even more. Nonetheless, he said, that there are numerous examples of countries with hostile laws but accepting social attitudes and, conversely, of countries with neutral or supportive laws and negative social attitudes.

Several speakers rejected the claim that contemporary homophobia could be traced back to colonial-era laws. Joel Nana said that naming and analysing homegrown homophobia was the first step to tackling it. The law is just one way of expressing homophobia, and it has more deep-seated roots, he said.

Kapya Kaoma, an Anglican priest from Zambia who is now conducting research in the United States, analysed the contradictions in the current Ugandan debate on homosexuality. It is described as 'un-African' and a Western import, but there is strong evidence that the backlash against men who have sex with men was inspired by American evangelicals. African countries were now being recolonised with socially conservative American thought, he suggested.

Anti-Gay Laws Spread HIV: UN. 22/7/10

"Some 19 of 48 countries in the Asia Pacific region continue to criminalise male-to-male sex"

Vienna - Laws criminalising gay sex in many countries in the Asia-Pacific region are pushing infection rates of HIV and Aids to "alarming" levels, the United Nations Development Programme (UNDP) said on Wednesday.

"Some 19 of 48 countries in the Asia Pacific region continue to criminalise male-to-male sex," the UNDP said at the World Aids Conference being held in Vienna this week.

"These laws often taken on the force of vigilantism, frequently leading to abuse and human rights violations. Correspondingly, HIV prevalence has reached alarming levels among men who have sex with men and transgender populations in many countries of the region," it said.

A new report, commissioned by the UNDP and the Asia Pacific Coalition on Male Sexual Health (APCOM), found that by criminalising gay men and transsexuals, people were being denied access to treatment and health services.

"Repressive legal environments institutionalise discrimination, limit funding and in effect obstruct the participation of men who have sex with men and transgender people in protecting themselves and their families, friends and communities from HIV," said Jeff O'Malley, director of the UNDP's HIV Practice.

He also called for the abolition of "punitive laws and discriminatory practices".

APCOM head Shivananda Khan said unnecessary infection could be prevented by ensuring that "all citizens of a country, irrespective of their sexual orientation or gender identity, can access health services".

The report's author, John Goodwin, said "comprehensive and rights-based HIV responses among men who have sex with men and transgender people can occur only when a conducive and enabling legal environment is created".

Law Should Not Reinforce HIV Stigma. 2/7/10

Discriminatory laws are impeding HIV prevention efforts across the world and have no claim to our support

The Guardian

Laws that reinforce HIV-related stigma and prejudice impede both HIV prevention efforts and access to treatment. They do so by making populations at particular risk of infection (including injecting drug users, men who have sex with men, migrants and sex workers) harder to reach, and by sustaining the social and economic exclusion of people living with HIV (PLHIV).

Despite strong empirical evidence to this effect, countries across the world persist in the enforcement of existing discriminatory and punitive laws, and in introducing new ones. Particularly egregious examples include the criminalisation of drug use, homosexuality and sex work, the failure to provide needle exchange programmes or safe injection sites for injecting drug users and the criminalisation of non-intentional HIV exposure and transmission (including, in some parts of Africa, of women who transmit HIV to their infant children).

There is also evidence of discrimination against PLHIV in employment and in access to healthcare, breaches of medical confidentiality, the imposition of travel and residence restrictions, and isolation of PLHIV in custodial settings, such as prisons and immigration detention centres.

None of these have been shown to contribute to reducing the spread of HIV, and some do, or have the potential to do, precisely the opposite. Where homosexuality is criminalised, men who have sex with men will not be frank about their sex lives with health workers, and may put female partners at risk by not taking precautions.

Where drug use is criminalised, and drug users marginalised, there may be less public support for, or incentive to provide, adequate harm-reduction measures, such as needle and syringe programmes, safe injection sites or substitution therapies.

Where it is a criminal offence to recklessly to expose someone the risk of HIV infection without first disclosing one's HIV-positive status, a partner may assume (wrongly) that non-disclosure means that the person is HIV negative; and where a person believes that he may have transmitted HIV, the fear of a prosecution may result in a failure to disclose after the event – thereby preventing the partner from accessing effective post-exposure prophylaxis (where this is available).

Where there is an absence of law that makes discrimination on grounds of HIV status unlawful, employers and service providers have no incentive to accommodate the particular needs of PLHIV, or to ensure that their rights to fair and equal treatment are respected.

Early on in the epidemic it was argued that an effective response to HIV/Aids would only be possible if it was grounded in respect for human rights. This argument has been given further impetus this year with a number of important initiatives and calls for action. In April, the UN special rapporteur for health issued a report calling for the decriminalisation of all consensual same-sex sexual activity, of sex work, and non-intentional transmission of, or exposure, to HIV.

In June, a global commission on HIV and law was established under the auspices of the United Nations development programme to gather evidence about the effects of discriminatory and punitive laws at regional hearings across the world. And in advance of this summer's international Aids conference in Vienna (the theme of which is "Rights here, right now"), a group of international experts has issued a declaration for the decriminalisation of drug users and the implementation and evaluation of a science-based public health approach to address the individual and community harms stemming from illicit drug use.

HIV/Aids is a global blight. According to UNAids, almost 60 million people have been infected with HIV since the beginning of the epidemic, and 25 million have died of HIV-related illness. In 2008 there were some 33 million people living with HIV, and almost 3 million new infections – of which nearly half a million were children born with the virus. Although there has been substantial progress in coverage, only 42% of PLHIV have access to treatment (38% of children in low- and middle-income countries). For every two people starting treatment, five are infected. It is estimated that 40% of PLHIV are unaware of their infection.

These statistics show why HIV/Aids continues to be a global health priority. It may reasonably be thought that the absolute priority of governments, faced with these figures, would be to recognise that HIV/Aids is a public health crisis rather than an opportunity to punish and marginalise.

There are many ways in which we can seek to evaluate the legitimacy of a legal provision. In the context of HIV/Aids I suggest that the following are the only questions we need to ask. First, does this law violate the fundamental human rights of PLHIV, of vulnerable populations, and those at particular risk of infection? Second, does it (or could it) have the effect of impeding efforts to limit the spread of the virus? If the answer to these questions is yes, it is a law that has no claim to our support. More than that, I would argue it is a law that is positively dangerous; not only to those most directly impacted by it, but to every single one of us. It is not only HIV that harms people – bad laws harm them too.

Kenya: HIV Carries Moral Stigma - Report. 31/5/10

“You simply keep quiet because you do not want to reveal your status and in essence reveal the fact that you were 'immoral'”

Nairobi - Many Kenyans see HIV as a punishment for immoral behaviour, which tends to perpetuate stigma against people infected with the virus, according to a report by ActionAid International, an anti-poverty agency, and Women fighting AIDS in Kenya, a local NGO.

The study, Extent and Impact of Stigma and Discrimination on Women and Children Infected and Affected by HIV and AIDS, found that 74 percent of respondents in 430 households in three districts of western Kenya felt people with HIV deserved their positive status as a punishment for morally unacceptable conduct, while 70 percent thought people with HIV were promiscuous.

"When you still have many people who view HIV infection as a punishment for immoral behaviour, it is a clear indication that they would stigmatize those living with the disease," said Ruth Laibon Masha, a national coordinator at ActionAid International's Kenya office. "Further, they have low risk perception because they feel they are not immoral, and would therefore not contract HIV."

Tina Mlambo, who lives in the informal settlement of Kariadudu in the capital, Nairobi, told IRIN/PlusNews: "AIDS came for people who are sleeping with many people. If you are a good person who only sleeps with one person, or don't sleep with anybody, where do you get AIDS?"

Yet according to the latest Kenya AIDS Indicator Survey, HIV is spreading fastest in stable, long-term relationships.

High stigma levels

More than half the survey participants were unwilling to share a meal with an HIV-positive person, or allow them to cook for functions or serve meals to guests. They were even unwilling to allow HIV-positive people to share household utensils.

Mlambo said she would not use the same basin as somebody who had HIV to bathe or wash her clothes. "I just feel ... that they can do something to also make me get it."

ActionAid researchers found that HIV-positive people often travelled far to obtain HIV testing and counselling or life-prolonging antiretroviral drugs. "About 60 percent of people we interviewed in the study say they travel long distances to seek HIV-related services just to conceal their status to the immediate community, for fear of stigma," Masha said.

People living with HIV are described in a variety of disapproving terms: Ochoyo ruoth (disgracing God); Ocham ma ok cham (has eaten the forbidden one); ikhwena yakhomba (licked by the crocodile).

Women bear the brunt of the stigma: about 70 percent of respondents believed that female sex workers spread HIV in the community, while 33 percent of HIV-positive married women interviewed had been abandoned by their husbands after testing positive.

Lillian Muthee, who has been living with HIV for six years, said religious institutions had much to do with creating a link between HIV and immorality, so they should be at the forefront of efforts to change the public perception of people living with HIV. "You simply keep quiet because you do not want to reveal your status and in essence reveal the fact that you were 'immoral'," she said.

Risk perception

Dr Nicholas Muraguri, head of the National AIDS and Sexually Transmitted Infections Control Programme, said although knowledge of HIV was nearly universal in Kenya, there was a need to raise people's awareness.

"If you know that you are also at risk, then you can't stigmatize another person - we are designing strategies to ensure that people appreciate the fact that they are not immune," he said. "We are determined to increase public education to reduce stigma."

The study suggested that the strategies aimed at reducing stigma be revised, and stressed the need to make people and communities appreciate their own risks and vulnerabilities. It also called on key institutions and opinion-makers to take the lead in reducing stigma.

"Use positive images of people living with HIV to reduce negative imagery," the authors recommended. "This will reduce fear-based assumptions made about people living with HIV, such as the belief that HIV results in immediate death, and that people living with HIV are a danger to society."

Banning all Gay Men from Donating Blood is Unscientific and Wrong, Say AIDS Researchers. 25/5/10

Time to change the policy that bans blood donations in Canada from all men who have sex with men,

It is time to change the policy that bans blood donations in Canada from all men who have sex with men, states an article in CMAJ (Canadian Medical Association Journal).

Since 1983, blood agencies in Canada, the United States and other industrialized countries have disallowed blood donations from men who have sex with men because of the possibility of infection with HIV/AIDS. The exclusion barred men who had sex with men from 1977 onwards as it was determined this date preceded the start of the AIDS epidemic.

Prospective blood donors are required by Canadian Blood Services and Hema-Quebec (and blood agencies in other countries) to complete a questionnaire about medical history and potentially harmful behaviour. Intravenous drug users, people with possible exposure to Creutzfeld-Jakob disease, people who have exchanged money for sex or drugs and men who have sex with men are all permanently deferred from giving blood.

However, while some industrialized countries such as France, Germany, the US and Canada have lifetime deferrals, others have shorter deferral periods: one year in Argentina, Australia, Japan, Hungary and Sweden, five years in South Africa and 10 years in New Zealand.

In 2005, an estimated 5.4% of homosexuals and bisexuals in Canada were HIV- positive, 67-fold greater than the general population. However, more than 95% of homosexuals and bisexuals in Canada are not HIV-positive.

The risk of a false negative, one reason for the ban, has been almost eliminated.

"With the development of more sensitive HIV detection tests, the potential occurrence of a false-negative result is now remote, since the system no longer relies exclusively on either the enzyme-linked immunosorption assay (ELISA) introduced in 1985 or the more accurate confirmatory Western blot test, also introduced in 1985," writes Dr. Mark Wainberg, McGill University AIDS Centre, Jewish General Hospital with coauthors.

A significant benefit to reducing the deferral period for men who have sex with men would be the enlargement of the blood donor pool. A one-year deferral would result in a risk of one HIV positive unit of blood being undetected in every 11 million units of blood. Another option would be a five-year deferral which in the US would result in 71,400 more donors.

"Current policy is counterproductive in regard to loss of donors, good will, student protests, potential boycotts, lawsuits etc.," conclude the authors. "It should be noted that policy, has, in fact, changed to now permit donations from persons of Haitian origin. It's time to change policy again."

Civil Society and Media have Shared Responsibility to Ensure Accurate, Non-Stigmatising Reporting on HIV. 16/4/10

The fight against HIV needs to be multi-sectoral and inclusive, and the media should remain a strategic partner in interventions.

PRETORIA - The fight against HIV needs to be multi-sectoral and inclusive, and the media should remain a strategic partner in interventions. This was said by Mr. Jason Wessenaar, Project Director of the Siyasi Counselling and Testing Project in response to assertions that the language used by media practitioners when talking about HIV and AIDS issues often stigmatises and has done a lot of harm to, and compromised the fight against the epidemic.

The discussion followed his presentation titled using culture to address HIV and discrimination among people living with HIV' where he spoke about the importance of being careful of the language stakeholders use, as it may further stigma; terms including HIV/AIDS as opposed to HIV and AIDS, AIDS orphans as opposed to orphans and being clear to distinguish between people living with HIV and those who have AIDS were discussed.

Mr. Wessenaar explained that in South Africa, non-stigma guidelines for use in work with media practitioners - both journalists and editors - to inform reporting on HIV and gender issues have been developed. These guidelines can also be used in the workplace, and with faith based organisations. Further, a National Stigma Framework has also been developed for use by all sectors.

Media practitioners attending the Conference asserted that in their studies, journalists are not afforded the opportunity to specialise, in HIV and gender reporting for instance. Specialisation comes through the information and training that journalists receive in workshops, trainings and conferences; so civil society organisations and activists need to take some responsibility for the information that the media takes forward and circulates.

The meeting agreed that the fight against HIV must be a collective effort which includes all relevant sectors; there should be no exclusion.

Both the non-stigma guidelines and the National Stigma Framework were developed by the Siyam'kela Stigma Project at the Centre for the Study of AIDS at the University of Pretoria.

How Stigma Kills. 12/09

People don’t want us to: Cut their hair, Serve them food, Babysit their children, Marry them Or be their friend.* Why AIDS stigma is as deadly as the virus itself.

Defined as “a mark of shame, disgrace or discredit,” stigma has long plagued HIV/AIDS. It is one of the defining characteristics of the disease, differentiating it from its biologically-parallel-but-socially-altogether-different retroviral kin: hepatitis, herpes and human papillomavirus (HPV). While we can chirpily discuss vaccinating our children against HPV as we choke down our Cheerios, and we can sit comfortably in front of commercials for herpes drugs, the mere whisper of the word “AIDS” often causes all polite conversation to cease.

We’re not imagining this. In 2007, amfAR, the Foundation for AIDS Research, commissioned Harris Interactive to conduct a study among the general American public seeking their attitudes about women living with HIV/AIDS. The survey showed that the majority of Americans are uncomfortable around people living with the virus. More specifically, the study revealed that 59 percent of Americans are somewhat or not at all comfortable with having an HIV-positive woman providing them with child care; 47 percent of Americans are somewhat or not at all comfortable with having an HIV-positive woman serve them food at a restaurant, and 35 percent of Americans are somewhat or not at all comfortable with having an HIV-positive woman as their hairdresser. This study, which mined attitudes about HIV-positive women, flushes out that it is indeed the virus itself that makes people squirm. In other words, people don’t fear HIV because (as some suggest) they misperceive it to be a gay or a black disease; they fear HIV and the people living with it, period.

The study also revealed that the vast majority of Americans are not comfortable with the idea of having a romantic relationship with an HIV-positive partner. Eighty-seven percent of Americans are somewhat or not at all comfortable dating someone who is HIV positive, and 89 percent of Americans are somewhat or not at all comfortable marrying someone who is HIV positive. One in five Americans said they would not be comfortable with having an HIV-positive woman as a close friend. Ouch.

The results of a recent survey on poz.com about stigma showed that our readers’ perceptions of the general public’s attitude toward people living with HIV are spot-on. Eighty-eight percent of you said that your fear of being stigmatized has made dating/relationships more difficult (remember, 87 percent of the general public said they’re uncomfortable dating you), and 91 percent of you believe AIDS stigma prevents people from getting romantically serious with/getting married to you (89 percent of the general public agreed with you). That’s very close statistical mirroring.

Given that HIV-related stigma is as bad as we perceive it to be, it’s no wonder then that 65 percent of you said that HIV-related stigma has prevented you from disclosing to family members; 71 percent of you said it keeps you from telling coworkers; and 60 percent of you said you don’t tell friends because of fear of being stigmatized.

One statistic we found particularly disturbing in the Harris study was that very few Americans believe that HIV-positive women should have children. In response to the question, Should a woman with any of the following conditions have children?, fifty-nine percent said women with cancer should have a child; 47 percent of people said women with depression should; 37 percent said women with multiple sclerosis should; 20 percent said women with hepatitis C should; 19 percent said women with Down syndrome should; and 17 percent said women with schizophrenia should. Yet, only 14 percent of Americans said they thought women with HIV should have a child.

This points to a root cause of AIDS stigma: lack of education. Too many people still don’t have the correct facts about the disease. For example, women with HIV under proper medical care can usually have a child without passing the virus on and are likely to live long enough to parent the child. Since lack of information breeds fear and fear breeds stigma, one clear prescription for fighting stigma is renewed awareness and better education around the disease.

It would be one thing if stigma stopped with an attitude. If all it meant to be stigmatized was that some people didn’t like us, it would perhaps be manageable, albeit uncomfortable. But when stigma gets in the way of our survival, that’s another thing entirely. Thirty-four percent of you said that fear of stigma has prevented you from seeking care, treatment and support. And 19 percent of you said you don’t disclose to health care professionals because of HIV-related stigma, a fact that certainly compromises the level of care you are receiving. Imagine how many people don’t get tested for HIV because of stigma. It’s estimated that one in five Americans living with the disease is unaware of his or her status. And according to the CDC, it’s estimated that HIV-positive people who are unaware of their infection may account for 54 to 70 percent of all new sexually transmitted HIV infections in the United States. Seems clear to us that stigma is a barrier to individual—and public—health. Not to mention that 48 percent of you said fear of stigma has adversely affected your career. It’s harder to keep a good job and afford medical insurance and prescription drugs if you’re not performing at optimal levels at work.

But while much of the impact of HIV-related stigma is quantifiable, it is, arguably, those aspects of stigma not captured by statistics that prove the most devastating. As we went to press, more than 1,000 of you told us chilling stories of how stigma negatively affects your lives—breaking down your spirit and your will to live.

Only a small group of you spoke of how you fight stigma, standing proud and strong despite society’s desire to keep you down. Some of you have found the inner strength and resolve to rise up in spite of people’s fear and ignorance.

As a community of people living with HIV and as a society in general, we need to do a better job fighting stigma by reopening the dialogue about this disease and dragging the unseen facts and faces into the light. Because it is much easier to fear what we don’t know. (Interestingly, while 85 percent of you said that President Obama and his administration are not doing enough to combat stigma around HIV/AIDS, 78 percent of you said that the HIV/AIDS community itself is not doing enough to combat stigma.)

It's a chicken-and-egg conundrum. Stigma around AIDS will only dissipate when the world is safe enough for people with HIV to no longer fear disclosing. Individually, many of us living with HIV who have disclosed in POZ or in our lives have seen that people can be supportive and kind once they understand the facts around the disease. (Sixty-seven percent of you said that people treated you the same, post disclosure.) But 87 percent of you said that the current anti-discrimination laws do not sufficiently protect HIV-positive people from being stigmatized, which means that things must change before we can afford to show our faces and change the way the world sees people living with HIV—for the better.

Forty-nine percent of you said that HIV-positive people’s fear of being stigmatized is worse than the actual stigma. At POZ, we see repeatedly that this is true. For those who feel they are ready, and can safely come forward, speaking about having HIV can do much to erode the corrosive stigma that keeps us from good health. It bashes stigma when we show the world we have nothing to hide—and are nothing to fear.

STORIES OF STIGMA

The following are excerpts from some of the responses from readers to our anonymous survey about HIV-related stigma. We encourage you to post your stigma experiences as well.

I told a friend about my status while we were drinking coffee, and when I was done with the cup, he threw it out saying, “I will never drink out of that cup again.”

Certain Manifestations of Stigma Especially Hurtful for People with HIV. 5/11/09

Excessive kindness can also do harm.

 Specific manifestations of HIV-related stigma best predict psychological distress in HIV-positive individuals, Dutch investigators report in the November edition of AIDS. These include difficulties with health care workers and lack of frankness within the family, but also exaggerated kindness from family members.

“Our findings suggest that certain setting-specific manifestations of stigma are indeed more psychologically damaging than others”, comment the investigators.

There is a considerable body of research that shows that HIV-related stigma causes psychological distress in people with or affected by HIV. However, no research has previously explored how particular manifestations of stigma in certain settings affects the psychological well-being of people with HIV.

In 2007, Dutch investigators therefore conducted a cross-sectional (or “snap-shot”) study involving 669 HIV-positive patients. These patients had a mean age of 47 years and were well educated, with almost 50% having a degree. Most (80%) were gay men, 68% were in employment and 48% had a partner.

The study participants completed a questionnaire to determine the manifestations of HIV-related stigma that were most associated with distress in six settings (friends, family, healthcare, partner, work, and leisure).

A total of eleven manifestations of stigma were included in the questionnaire (advice to conceal HIV infection or not to disclose, blame, increased physical distance, excessive hygiene, indifference, exclusion, awkward social interactions, exaggerated kindness, and aggression).

Manifestations of stigma from friends that were most associated with distress were awkwardness and excessive kindness. Being advised to conceal one’s HIV status, avoidance and excessive kindness were all associated with distress if experienced from family members. Stigma in healthcare settings was especially upsetting if it involved indifference or awkward social interactions. Finally, advice to conceal and exaggerated kindness caused distress if they were experienced in a relationship.

The investigators conducted statistical analysis that controlled for potentially confounding factors.

This showed that only four manifestations of stigma remained significantly associated with psychological distress.
Three of these were experienced in the setting of the family and were being told to conceal (p < 0.01), avoidance (p < 0.01), and experiencing exaggerated kindness (p < 0.05).

The final significant manifestation of stigma associated with psychological distress involved awkward social interactions in healthcare settings (p < 0.05).

“Stigmatization by family may be particularly detrimental as families are not chosen and often considered an important source of unconditional love and support”, write the investigators, who suggest that experiencing stigma from family members may threaten the fundamental human “need to belong.”

As healthcare professionals are expected to be knowledgeable about HIV, the investigators suggest that actions that suggest stigma are likely to be especially disappointing for people with HIV and cause distress.

Reference

Stutterheim SE et al. HIV-related stigma and psychological distress: the harmful effects of specific stigma manifestations in various social settings. AIDS 23: 2353-57, 2009.

Feelings Of Stigmatization May Discourage HIV Patients From Proper Care. 22/10/09

ScienceDaily   (Oct. 22, 2009) — The feeling of stigmatization that people living with HIV often experience doesn't only exact a psychological toll -- new UCLA research suggests it can also lead to quantifiably negative health outcomes.

Poor Health And Lack Of Support Associated With HIV-Related Stigma. 10/7/09

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