Advocacy Resources - TB

 

Call to Action for Childhood TB

We, participants gathered at the ‘International Childhood Tuberculosis Meeting’ held March 17-18, 2011 in Stockholm, Sweden recognize that:

o        Worldwide, at least 1 million TB cases occur each year in children under 15 years of age.
o        The true burden of TB in children is unknown because of the lack of child-friendly diagnostic tools and inadequate surveillance and reporting of childhood TB cases.
o        Children with TB infection today represent the reservoir of TB disease tomorrow.
o        Children are more likely to develop more serious forms of TB such as miliary TB and TB meningitis resulting in high morbidity and mortality.
o        Despite policy guidelines, the implementation of contact tracing and delivery of isoniazid preventive therapy (IPT) to young and HIV-infected children is often neglected by public health programmes.
o        Most public health programs have limited capacity to meet the demand for care and high-quality services for childhood TB.
o        TB care for children is not consistently integrated into HIV and care and maternal and child health programs.
o        BCG, the only licenced TB vaccine, has limited efficacy against the most common forms of childhood TB and its effect is of limited duration.
o        Due to inadequate case detection it is estimated that a large number of children suffering from TB are not appropriately treated. This is further compounded by drug stock outs and the lack of child-friendly formulations of drugs for TB treatment and prevention.
o        Children are rarely included in clinical trials to evaluate new TB drugs, diagnostics or preventive strategies.
 
To address this current situation, we, the undersigned, call for:
o        National TB programmes to include and prioritize childhood TB in their national strategic plans in order to address millennium development goals for children and pregnant women.
o        All health care providers to integrate childhood TB into their services.
o        The scientific community to include children—of all ages—in clinical and operational studies.
o        TB drug and diagnostic product developers to specifically include children in development plans and implementation of research at an early stage.
o        Donors to encourage collaboration with researchers, local communities, TB control programmes and other stakeholders to address the growing problem of childhood TB concentrating on:
Innovative research to develop child-friendly TB diagnostics, drugs, biomarkers and vaccines
The strengthening of public health facilities and services so that mothers and children with and without HIV can receive appropriate TB care
o        Providers of technical assistance to invest in building local technical and programmatic capacity to prevent, diagnose and treat TB in children in all age groups.
o        The WHO to accelerate in-country adoption and use of childhood TB guidelines.
o        Policy makers to adopt the existing and new WHO recommendations for childhood TB, evaluate implementation, scale-up and assess the impact of implementation strategies.
o        Civil society to demand equitable prevention, diagnostics, treatment and care services for childhood TB and to monitor the scale- up of these services.

To ensure that all children exposed to TB or suffering from TB are correctly managed and receive the appropriate treatment, the individuals and institutions signing on to this call to action, pledge to advocate for universal access to prevention, diagnosis and treatment of TB for people of all ages.

We furthermore call on the international community to endorse this call for action to ensure that there is capacity to address the needs of children with TB.

To sign on to this call-to-action please reply with your name, country, and organization/affiliation (if appropriate) to childhoodTB@treatmentactiongroup.org

 

Children are Unknown Victims in Global TB Response

It is estimated that at least one million tuberculosis (TB) cases occur each year among children, and most of them in developing countries. These are conservative estimates because many children with TB are not notified, and many others live without access to proper diagnosis or treatment. This makes it difficult to calculate the true number of children affected by the disease. 

Childhood TB has not received the attention it deserves in the global TB response. The real tragedy is that children have been largely neglected in research, epidemiology and surveillance. “Children who are exposed to TB include those from poorer families, those in close contact with TB patients--especially infected relatives, malnourished children, and children living in overcrowded conditions. We lack the proper mechanisms to really help these infants and children.” says Zari Gill, World Vision’s director of infectious disease.

World Vision has specifically been working to draw attention to the impact of TB on children and to raise awareness in communities of the signs and potential effects of TB in children. Staff also work to strengthen local health systems to increase access to diagnosis and treatment, and to help communities monitor their TB patients to assure they complete their full course of TB treatment.

In its community-based response, World Vision trains local volunteers to conduct directly observed treatment short-course (DOTS) for TB treatment to help increase community knowledge about TB transmission, prevention and treatment. Training community volunteers contributes to the capacity of the local health system, freeing health staff time to focus on diagnosis and contact tracing, which is instrumental in the fight against TB. Contact tracing enables the community to identify where a person infected with TB contracted the disease, seeking to treat the disease at the source to prevent re-infection as well as further spread of the disease.

Globally, World Vision joins other organisations in its fight against TB. World Vision partners with the Stop TB Partnership and TB REACH. The TB REACH initiative of the Stop TB Partnership has a fast-track competitive selection of innovative projects, rapid disbursement of funds and a robust monitoring and evaluation system. TB REACH offers a lifeline by finding and treating people in the poorest, most vulnerable communities in the world. In areas with limited or nonexistent TB care, TB REACH supports innovative and effective techniques to find people with TB quickly, avert deaths, stop TB from spreading, and halt the development of drug-resistant strains. 

One of the newest projects funded by TB REACH is in Rwanda, where the World Vision team has launched the TB project on a national scale. In the first four months of the project in Rwanda, World Vision has helped to identify 154 new TB cases in adults and children, educated more than 1500 youth, obtained extensive media coverage, trained and equipped community health workers in three districts, and provided eight microscopes to local health facilities—necessary equipment for TB case detection.

Esperance Akayezu is a 24-year-old mother of two who was helped through this TB response project. Just six months ago Esperance believed dying was better than living. Since then, with the help of WV Rwanda’s tuberculosis (TB) response project, she has received diagnosis and treatment for her TB, as well as other assistance. She no longer despairs of life.

Esperance lives in a mud house with her pregnant sister and her two children, Uwase Divine and Ishimwe Prince, who are being treated for malnutrition. The entire family lives on sparse wages earned by local farm work. She has struggled to raise her two children in these circumstances, and her TB disease has put her children at risk of infection.

Esperance retells her first encounter with World Vision’s TB programme: “A few months ago, a community health worker who works with World Vision invited me to a TB screening. The next day, I went with her for screening. My results showed I was positive for TB, but, fortunately, HIV-negative. I was shocked and really needed some extra support.”

Since receiving help, Esperance is healthier and her children are protected from becoming infected with TB by their mother. Through community health workers trained by World Vision, Esperance receives regular home visits and medication. World Vision also assists with porridge, vegetable seeds and rabbits for her kitchen garden. She has gained 13 kilograms thanks to better nutrition.

“I thank World Vision and local health centre staff because they have advised me on several issues and provide counselling whenever I need it,” she said.

Thanks to generous sponsors, all TB patients have been supported through community-based DOTS, as well as small income generating activities such as small livestock (pigs, goats, rabbits). They also receive vegetable seeds and training about HIV and nutrition -- conducted especially for prevention and management of TB.

Read World Vision’s Call to Action to Prevent Childhood TB.

 

Global Health and Nutrition

A Call to Prioritise Children in the Global TB Response:

In the global response to tuberculosis (TB), children are the “silent sufferers.” Since they pose a low threat for transmission, children with TB have been relatively neglected. This is a stark violation of their right to health as per Article 24 of the Convention on the Rights of the Child. Attention is focused primarily on adults with TB because they are symptomatic, readily diagnosed and considered potential transmitters of infection.

Children are particularly vulnerable to severe disease and death due to TB. It is estimated that at least one million children develop TB each year..1 This unacceptably high toll of disease and death among children is made worse by the HIV epidemic. TB manifestations are more severe and progression to death is faster among HIV-positivchildren, yet they are at risk of diagnostic error and inappropriate treatment. Increased international travel and immigration have led to an increase in childhood TB rates in traditionally low burden, industrialised countries, and threaten to promote the emergence and spread of multidrug-resistant strains. Children with latent TB infection become a reservoir for future transmission when the disease reactivates in adulthood, fuelling future epidemics.2 We need to simultaneously address many risk factors for TB, especially HIV and AIDS and undernutrition3 as well as addressing the social determinants of tuberculosis4

A child usually gets TB infection from being exposed to a sputum-positive adult--usually a parent. Because of their immature immune systems, young children under age ten are especially at risk of not only becoming infected but of developing active tuberculosis.

Children also suffer when their mothers have TB, often requiring them to leave school to care for their family or leaving them as orphans when their mother dies. Tuberculosis is the third highest cause of death among women of reproductive age 5and therefore has a massive impact on the lives and health of children. Annually 700,000 women die of TB.6 Without rapid scale-up of TB programmes, as many as four million women will die between 2011 and 2015, leaving millions of children orphaned.

World Vision’s Experience:

World Vision works with children, families, communities and donors all over the world to improve the well-being of children. World Vision’s global Child Health Now campaign calls on governments to meet their commitments and increase their efforts to improve child health in order to meet MDG 4 by 2015. Throughout its experience with TB over the past decade, World Vision has identified critical needs and gaps in the response to TB among children, including:

- Children with TB are not detected: Diagnostic tests appropriate for children are not accessible.
- Children with TB are not notified: Glaring gaps in epidemiological data.
- Children with TB are not treated: Paediatric formulations and doses of drugs are not available, nor compatible for treatment with HIV.

World Vision’s Call on behalf of the “Silent Sufferers” of TB:

- Increase political commitment: Include a focus on childhood TB in global TB efforts, including the Global Plan to STOP TB, and ensure that 10% of global TB funding is designated to address TB in children.
- Heed the call to Children’s Rights: Address TB in children as a basic human right. - Improve point-of-care diagnostics for TB in children by 2015. - Ensure paediatric formulations and doses of TB Preventive Therapy and anti-TB drugs compatible with antiretroviral drugs for HIV treatment are available by 2015.
 
1 Guidance for National Tuberculosis Programmes on the management of tuberculosis in children, Stop TB Partnership,
http://www.stoptb.org/wg/dots_expansion/assets/documents/IJTLD_OS_ChildhoodTB_Chapter1.pdf
2 Pediatric Tuberculosis: The Lancet Infectious Diseases
3 Malnutrition and Tuberculosis: Macallan DC
4 The Social Determinants of TB; From Evidence to Action: April 2011, Vol 101, No. 4 | American Journal of Public Health 654-662
5 Women’s Health Fact Sheet; WHO : http://www.who.int/mediacentre/factsheets/fs334/en/index.html
6 WHO: Tuberculosis and Gender  

 

Understanding and Challenging TB stigma: Toolkit for Action

‘Understanding and challenging TB stigma’ has been developed in response to the need to address TB stigma especially where TB and HIV co-infection rates are high. The publication contains a range of participatory games, exercises and picture tools to help address TB stigma, suitable for a range of contexts and settings.


It was written by and for trainers and will help trainers plan and organise participatory educational sessions with community leaders or organised groups to raise awareness and promote practical action to challenge HIV and TB stigma and discrimination.

This toolkit was developed as part of the Alliance Africa regional stigma training programme through a partnership with ZAMBART (Zambia AIDS-Related Tuberculosis project) Project in Zambia involving participatory workshops with health-workers, people living with HIV and ex-TB patients. Swedish International Development Agency (Sida) and the European Union were the main funders that supported the development of this toolkit.

This toolkit includes 19 participatory exercises with clear and easy to follow instructions aimed at exploring different issues related to TB and stigma:

Naming TB stigma through pictures

How has TB affected my life? (reflection)

Naming TB stigma in different contexts

Forms, effects and causes of TB stigma

Assessing baseline knowledge

Fears about getting TB (risk continuum)

Fears about getting TB at home

Countering myths and misconceptions

TB diagnosis and stigma

Do’s, Don’ts and DOTS

Challenging TB stigma in health facilities

TB-HIV link

The burden of secrecy

Sharing the burden of care

TB and human rights

How men and women experience TB stigma

Children and the wall of silence

To tell or not to tell (children and information)

Empowerment and action planning

Who is this toolkit for?

This toolkit is primarily intended for use by NGO support programmes in Africa who are working on, or intend to work on TB and HIV related issues. The toolkit will also be useful to NGOs and CBOs themselves as well as training organisations and individual trainers working on TB and HIV-related issues.

How can you get a copy of this toolkit?

Electronic copies:

· Click this link to download a PDF of Understanding and challenging TB and Stigma from the Alliance website (3mb).

Printed copies:

· You can order a free copy by replying to this email with TB and Stigma in the subject line. Please also confirm your postal address in your reply in case it has changed since we last contacted you.

Please note that only organisations working in Africa can request a printed copy and the quantity is limited to one per organisation.

How can you help more people get access to this toollkit?

We are keen to promote these resources to people working in Africa. Please pass this information to others who may not have access to the same information as you by mentioning this new toolkit in your e-mail group or similar forum; or on your website by using the link above.

Garry Robson

Communications Assistant

International HIV/AIDS Alliance

http://www.aidsalliance.org/

World TB Day - March 24th

24 March marks the day in 1882 when Dr Robert Koch detected the cause of tuberculosis, the TB bacillus. This was a first step towards diagnosing and curing tuberculosis.  World TB Day raises awareness about the global epidemic of tuberculosis (TB) and efforts to eliminate the disease. One-third of the world's population is currently infected with TB.  The Stop TB Partnership, a network of organizations and countries fighting TB, organizes the Day to highlight the scope of the disease and how to prevent and cure it.

Topline Media Messages for World TB Day 2011

Everyone in the world who needs TB care should be able to get it. That is not happening now.

Proof points/secondary messages:

• A third of people with TB are not reached with accurate diagnosis and appropriate care--that's about three million people each year. Most of them are in vulnerable and marginalized groups such as prisoners, slum dwellers, migrant workers, and drug users, or are living in poverty pockets.

• Civil society, health workers and businesses need to team up to drive universal access to TB care.

• In the 21st century, no one should die from TB, a curable disease. But at least 8 million people will die unnecessarily between now and 2015 if we don't take action.

2. Investing in TB saves lives - and TB is a cost-effective investment.

Proof points/secondary messages:

• It costs as little as $100 to provide life-saving care for drugsensitive TB in many developing countries.

• In 2006 the Disease Control Priorities Project counted TB treatment among the ten "best buys" in public health (DCPP, Disease Control Priorities in Developing Countries. 2006, Oxford University Press: New York. p. 289-309.)

• In 2009 researchers reported that countries could earn up to 10 times what they invest in TB care. (Economic Benefit of Tuberculosis Control, Ramanan Laxminarayan, Eili Klein, Christopher Dye, Katherine Floyd, Sarah Darley, Olusoji Adey here)

• In 2008 the Copenhagen Consensus ranked TB case finding and treatment fourth most cost-effective among interventions to control disease (CCC. Copenhagen Consensus 2008. 2008 [cited 2010 April 15]; Available here).

 

3. New genetic tests for TB will soon make it possible to rapidly identify everyone who needs TB treatment.

Proof points/secondary messages:

• Progress on rapid TB tests offers lots of promise, but we must also ensure that all will have access to the new test and that those who are diagnosed have access to high-quality TB care

• For every 100 people living with HIV who have MDR-TB: traditional microscopy will detect zero. Xpert will detect 95.

• For every 100 people living with HIV who have active, drugsusceptible TB: traditional microscopy will detect 40. Xpert 70-80

• 1 Xpert machine (the 4-module model) can test 4,000 people per year. Total cost is $100,000

• Greater investment in research will take us to the next critical step: a cheap, simple rapid TB test that can be used in any basic health care setting and requires little technical knowledge.

• The current treatment for TB is very long - six months or more. A new four-month treatment is on the horizon, but will only come to market if there is sufficient investment.

• We will not eliminate TB without a vaccine that is safe and effective in preventing the disease in people of all ages.

4. No one living with HIV should die from TB.

Proof points/secondary messages:

• There has been a huge investment in life-saving antiretroviral treatment, but TB takes the lives of far too many people infected with HIV and is threatening progress.

• Two million people living with HIV will die of TB between now and 2015 if we don't intensify efforts.

• All TB patients should be tested for HIV and all people in HIV care should be screened for TB. In places where TB represents a risk all people living with HIV should be receiving preventive treatment or anti-TB drugs as appropriate.

• In June, global leaders will meet at the UN in New York to seek a way forward on ending deaths from TB among people with HIV.