HIV Denial and Debate

HIV activists have often focused on things the majority of people don’t want to hear. We’ve talked about who’s having sex with whom and how to do it safely; health care, racism, sexism and homophobia; power positions in relationships, government and research; and much more. There is always something to learn- scientific research is revealing more about the natural progression of HIV. We’re learning what treatments work in whom and in what combination.

But there is a small arm of activists who question HIV’s connection to AIDS, and perhaps the most famous of them died last month: American Christine Maggiore. Her story is more complex than I can sum up in a few sentences, but here it goes: Maggiore questioned whether HIV led to AIDS, and whether HIV treatments could be more toxic than HIV itself.  She didn’t take antiretroviral treatment during her pregnancies and breastfed both her children. Her youngest died suddenly in 2005, at age three. When autopsy findings indicated AIDS-related pneumonia, Maggiore challenged the AIDS conclusion and hired her own autopsy analyst. (Science Based Medicine blog provides a summary of both autopsy findings).

People have criticized her views, as she was not a medical research professional herself, and blamed her for her role in contributing to the South African government’s stance that HIV did not lead to AIDS. It has been estimated that the decisions of the government at that time contributed to 300,000 deaths.  I am struck by the sadness of it all.

I don’t personally agree with the beliefs she held and find it sad that she may have died prematurely, not to mention her daughter, and the many other people’s lives she may have influenced. BUT, what a set of decisions HIV demands! I think we shouldn’t lose sight of that set of demands.

HIV presents complex changes to body, mind, and relationships. Health care decisions have impact on the future of more than one person. The difficulty and potential outcomes (good and bad) of those decisions can’t be underestimated. No one can tell the future with certainty.

I am left more committed to pointing people to resources and care providers that help them make the “right” (difficult, complex, life-changing, unable to predict the future) decisions for them. We now have over 25 years worth of information and experience with HIV. In the big scheme of diseases, it’s not everything, but let’s use it to our advantage.  And keep learning more.

- Janet

This was posted on Friday, January 16th, 2009 at 4:50 pm and is filed under Education & Resources, News . Feel free to respond, or trackback. Read our comments policy.

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