The International AIDS Conference is gathering thousands of people, from patients to researchers to activists, to achieve nothing less than an "end to the HIV epidemic." And although the epidemic is still claiming way too many lives, recent advances in research, treatment, and prevention have been nothing but phenomenal. As someone who has been fighting another deadly scourge, tuberculosis (TB), for more than 15 years, I find myself wondering: what can we learn from HIV activists?
I was recently in Bangkok and had the opportunity to speak to a group of them about TB -- the number one killer of people with HIV. And they were aghast when they found out about the state of affairs in the TB world. Some were visibly angry when they learned that about 40 percent of patients with TB are not even diagnosed, that children have effectively been ignored by the current "global strategy," and that thousands of patients with the disease die because of lack of in-country programmatic capacity and access to off-patent medicines. Their outrage reminded me of how normal human beings should feel when somebody dies unnecessarily. And for the first time in a long time, I felt that perhaps there was room for change.
In recent years there has been very little reaction about the large number of TB deaths that occur annually (somewhere between 1.4 and 1.7 million in 2010), despite the fact that this is a disease for which a treatment has existed for more than half a century. This is in contrast to the HIV community, which reacts with anger when people are dying in the face of available treatment. Social justice activist and Treatment Action Group cofounder Mark Harrington brought something very interesting to my attention. Considering current treatment cure rates for both TB and drug resistant variants of the disease -- this is with drugs that were developed 40 or more years ago -- we should see about 250,000 deaths worldwide each year. This means that we are not even using our current, weak, and dismal armamentarium against TB optimally. In the world of TB -- one which largely does not include the voices of TB patients -- we have either become numb or complacent, and are willing to accept six times that number of deaths without question.
Like HIV activists, we should no longer accept unnecessary deaths. This means going out on a limb and looking for completely new ways to address the problems at hand and accept nothing less than zero deaths from this treatable disease. This means zero deaths now. Not by 2050, not by 2040, not by 2030. It would seem absurd if the HIV community had such goals, and we should not either.
In order to achieve that, there are some simple things that have to happen. We need to push for true point-of-care diagnostics. With enough research funding and innovation, it is possible to have this. We need to make sure that children get appropriately treated. We need to link up with the HIV community to address TB-HIV co-infection. According to recent data, only about 5 percent of HIV patients are screened for TB, which is unacceptable since TB is the biggest killer of people living with HIV. We need to make sure that people with latent disease, who can potentially become ill, receive appropriate prophylaxis, even if they live in a poor country. And we need to break out of our silo and find and offer treatment to people where they work (e.g. mines, garment factories), and where they seek care (e.g. maternal-child health clinics, general practitioners office).
This may seem obvious to people attending the International AIDS conference and to people who get sick with TB. But that's part of the problem. What really sets the "TB community" apart from HIV activists is that the voices of the real TB community -- those suffering from this disease and their families, communities, and local advocates -- are rarely heard. People living with HIV and their friends and their communities are loud and clear, from ACT UP to super stars like Elton John; patients are part of the discussion and help frame the solution. The HIV community has taught us that it is not one organization's job to lead the response. It is the job of all of us: parents, nurses, doctors, health workers, patients, neighbors, policy makers, and voters (especially people in donor nations whose taxes could be more effectively utilized in this struggle). Health practitioners and policy makers have to learn from the HIV experience about how best to support local communities of people affected by TB to effectively organize around this struggle.
Lastly, and most significantly, we have to learn from the HIV community that saving lives does not just mean giving people medicines. For TB, this means being clear that TB is a disease of poverty and that part of the solution will involve engaging other partners in the broader development community (the World Bank, Oxfam, etc.) so that they can join in the struggle and tackle TB as part of their work. Without this, we'll be stuck in a silo that really offers no way out. The HIV activists have shown that it is up to us to work in solidarity with people who have suffered, and still suffer, from this disease, people whose family members or neighbors or friends have died, and people who live in vulnerable communities, to demand appropriate care.
Sophie G. Beauvais, MS, Communications Manager at the Global Health Delivery Project at Harvard University, contributed to this post.