Map of life expectancy at birth from Global Education Project.

Sunday, August 03, 2008

The elephant in my blog?

As I pack to go to the International AIDS Conference, it occurs to me that I have written rather little about HIV here. Not that I've never mentioned it, but it's been a rare subject. Now that I think about it, that is a bit surprising because HIV is in fact a major focus of my work. It has also killed some friends of mine, most notably Wayne Wright. If not for Wayne, I would not today do what I do and I would not be writing Stayin' Alive.

I think the main reason I have not particularly emphasized HIV here is that I study it not because it's more important than other diseases, but because it is such a compelling example for a medical sociologist. HIV highlights many issues which are important in medical sociology generally.

One is stigma. Disease has been associated with stigma at least since the Diagnostic and Statistical Manual of Skin Diseases in Leviticus 13:

44 He is a leprous man, he is unclean: the priest shall pronounce him utterly unclean; his plague is in his head.

45 And the leper in whom the plague is, his clothes shall be rent, and his head bare, and he shall put a covering upon his upper lip, and shall cry, Unclean, unclean.

46 All the days wherein the plague shall be in him he shall be defiled; he is unclean: he shall dwell alone; without the camp shall his habitation be.

There is a stigma associated with being HIV infected which in many cultures, including for many people in the U.S., is so powerful that people with HIV are forced to hide their condition from friends and family, even household members. HIV also disproportionately infects people who carry social stigma in the first place, here in the U.S. -- male homosexuals -- and everywhere it is associated with poverty and low social status, although of course it knows no boundaries and the wealthy and powerful are not immune.

Now that HIV disease is treatable, it is paradigmatic of chronic, complex diseases in other ways. Management of HIV requires very strict adherence to often complex drug regimens that have unpleasant side effects, which can put great strain on the therapeutic relationship between physician and patient. Yet the diagnosis of HIV usually occurs when there are no symptoms. It is the act of labeling, not any physical manifestation, that creates the Person Living With HIV, who immediately embarks upon a new social status. The biomedical concepts underlying HIV disease and disease care are rather difficult to understand, but they matter to the person with HIV because they explain the problem of viral drug resistance, and the importance of avoiding unsafe practices even with infected partners. (Not all HIV is the same; you don't want to give or receive a strain which is resistant to one or more drugs.)

The disease is expensive, both to treat, and in lost productivity. In some parts of the world, it is a major economic burden. It has proven very frustrating to biomedical scientists, eluding technical means of prevention, eluding cure, and constantly evolving to evade treatment. HIV has destroyed innumerable lives but, paradoxically, it has renewed the lives of some people for whom the diagnosis was a kind of epiphany. It has destroyed communities and ravaged entire nations, but it has also created communities and energized constructive social change.

If extraterrestrials had wanted to perform a revealing social experiment on humans, throwing HIV at us would have been a pretty smart trick. It will be a great day when we finally beat this thing, but meanwhile, we have to learn from it.

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