HIV activists help push tuberculosis awareness

Tallinn, Estonia: The call for a better, integrated approach to HIV and tuberculosis (TB) care has been getting louder worldwide in the past years. Equally, in terms of advocacy integration of the two diseases is gradually growing. People living with HIV speaking up on TB increasingly help put tuberculosis higher on the agenda. Read more

HIV and TB are the two deadliest infectious diseases globally, yet the attention given to and the awareness for the diseases remain largely unequal. Most of the spotlights are on HIV, not least because of strong activism for the disease. Advocacy for TB – though growing – remains much weaker. But TB's profile can be raised through the voices of those especially vulnerable to it: people living with HIV.

People who are HIV positive and infected with TB are 20 to 40 times more likely to develop active TB than people not infected with HIV. TB is a leading cause of death among people living with HIV, who have weakened immune systems. 
"Statistics show that especially in high burden countries people living with HIV are likely to get tuberculosis at least once in their lifetime. In some places co-infection is as high as 50% and mortality because of TB up to 60%," says Vivek Dharmaraj, project leader of Advocacy to Control TB Internationally (ACTION) Project / Global Health Advocates (GHA) India.

Engaging the HIV community is an area that ACTION/GHA has focused on. In India, they have worked extensively with the Indian Network for People living with HIV/AIDS (INP+) – a network of over 200,000 people in 24 states of India. "Advocacy is about education, empowerment and engagement," Dharmaraj explained at the sidelines of the Second Global Forum on TB Vaccines in Tallinn, Estonia, last month.

"Because this community is at such risk, they understand how serious TB is and how great the need is to have access to treatment. It is a matter of life and death," he continues. "TB is not easily diagnosed in the HIV patients; if undetected and not put on treatment early, tuberculosis can be quickly fatal in this co-infected condition. Apart from the need to know if they have TB, it becomes even more imperative that people living with HIV determine right at the start whether the tuberculosis is drug-resistant. As the community is educated and empowered in the area of tuberculosis they become engaged in advocacy. They can passionately advocate for better diagnostics tools, faster acting, less toxic drugs and vaccines."

"We have modules on TB, HIV-TB co-infection, treatment, what is freely available and then help them come to an understanding of what more is needed - diagnostics, drugs, etc," Dharmaraj says. "We encourage them to engage and advise their community, their local leaders, the politicians - who should be there for them. Not to blame but to go and share their knowledge and worries. They are often courageous and bold enough to speak up on TB as they have already taken the first step of coming out on their HIV status."

"HIV activists already deal with a lot of stigma," Claire Wingfield, TB/HIV project coordinator at TAG (Treatment Action Group) agrees. "And those with HIV/TB co-infection get the double stigma." In 2002 TAG, an HIV/AIDS research and policy think tank fighting for better treatment, a vaccine, and a cure for AIDS, included TB in its advocacy priorities because "we realized the people with HIV were at increased risk of developing and dying of TB." People living with HIV make loyal activists, Wingfield comments. "People get HIV for life, which means they are activists for life. When TB patients are cured, they are often no longer activists."

She sees the number of TB activists among people living with HIV growing. "It is great to see that for some TB is even their first issue now. They are absolutely raising the profile of TB. But it doesn’t have to be either TB or HIV. You can raise awareness for both, encourage discussion, make a difference."

Still, empowerment of TB patients has a long way to go, Wingfield stresses. "TB has such a public health approach, compared to the individual approach with HIV. There is not a lot of empowerment with information, neither among patients nor among health workers. The DOTS (Directly observed treatment, short-course) strategy is incredibly infantilizing, with people having to take medicine under observation of a healthcare worker. Where many HIV patients can exactly name their medicines, TB patients can often only say they take a yellow pill, a diamond shaped pill, etc. TB suffers from the white coat phenomenon: just take your medication because I said so."

"In India there has been some awareness among communities in the past few years. But some people still think TB is no longer a problem; that it is an old or only a poor person's disease or has even been eradicated," Dharmaraj of ACTION/GHA adds. "So a lot more has to be done to clear the air; we still need a bigger push to get the wider population involved more actively. We have to make sure to the disease is kept near the top of health agenda."

Wingfield hopes also activists from field other than HIV will increasingly address TB. "For mining communities, mother and child healthcare activists, labor unions, TB is a cross sector issue. It is important activists from other fields talk TB too."

Babs Verblackt - CNS(The author is a freelance journalist, a Fellow of CNS Writers' Bureau and Associate Communications atTuBerculosis Vaccine Initiative – TBVI) 

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