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TB Is About People

By Winstone Zulu

October 2003

Remarks at the opening plenary of the 34th World Conference of the International Union Against Tuberculosis and Lung Disease (IUATL), Paris, 2003.

I've been an HIV/AIDS activist for the past ten years. Although I knew that I was going to die of AIDS, no one specified exactly what that really meant in terms of the opportunistic infection that would take me. In my life as a person living with HIV, the nearest that I came to actually dying was when I had tuberculosis. And if I had died of tuberculosis, I would have been one of the AIDS statistics. Everybody, because they know I am HIV-positive, would have said I died of AIDS. Now technically, that would probably be true, because the underlying cause would have been HIV. But the fact that I took the TB medicines and got well shows that something is missing -- that in our fight against AIDS, we are not looking at the individual opportunistic infections that can be cured. I’m HIV positive. I took the TB drugs when I had TB and I am here speaking to you today. My brothers were HIV-positive too. They had tuberculosis but they didn’t take the TB drugs because they were not available, and they are no longer here.

In my recent travels, I found that this gives a different perspective to people. When you go to countries like France or the U.S.; when you talk about 50 million people living with HIV in Africa, many people just want to look away because the problem looks so insurmountable. They think, how can we deal with this? And the fact is that AIDS is known as an incurable disease. So when you say, "50 million people living with HIV in Africa," people then make the equation: HIV is equal to AIDS and AIDS is equal to death; there’s no cure. But if you say, hey wait: the biggest killer of people living with HIV in Africa and many other developing countries is tuberculosis -- and if you give them drugs that cost ten dollars, you can save someone’s life -- and you can avoid having more orphans ... then people see it differently. In place after place that I recently visited people said, well, this gives some hope.

We all know that antiretrovirals are ultimately what we need. They are medications that are available now that have shown they can prolong life and improve the quality of life. But for many of us the dream of getting antiretrovirals is much more farfetched than the dream of getting drugs for ten dollars that can cure you of your disease. Even to me, who has been an AIDS activist for a long time, this is a new way of looking at things. And now when I see someone living with HIV, I say, well, if you don’t have antiretrovirals now, you should go and get checked for tuberculosis. If you have tuberculosis, it can be cured. Now, I know there are difficulties in case finding, the diagnostics are very old, the drugs are difficult to take -- six months is too long to take drugs -- and there needs to be research and drug development around tuberculosis. But if you have TB, you can take these drugs we have and be cured.

I'm very encouraged that the organizers of this conference have invited, not only scientists, but also people living with tuberculosis and people living with HIV. I think this conference needs to have a community component so that you can actually see the people that you are talking about. It's not only about the germs and the pills, but also about the people under the microscopes and behind PowerPoint presentations. I'm also very glad that the WHO is now looking into social and community mobilization around the issues of tuberculosis. I believe that tuberculosis cannot be fought in the labs alone, and I think this is what has been missing. TB is about people; it is about our relatives, our friends; it’s about people who are actually living with this disease.

Winstone Zulu is founding member of the Zambian Network of People Living with HIV.

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