AIDS: The Human Factor

By Patricia Nell Warren, A&U Magazine. Posted April 17, 2001.

Right after the holidays, a young friend of mine decided to get tested for the first time.  The test said he was positive.  As I watched what he went through, I got a single searing snapshot of how deeply one person can be impacted by the heavy AIDS propaganda that bombards us every day.  

First he panicked.  Withdrawing from social contact, he quit his job, walled off his friends and family, started putting his affairs in order.  It didn't help that he had support networks.  That X in the positive box on his piece of paper had flung him into a strange, new universe where he felt himself to be all alone.  When a 26-year-old man puts his affairs in order, it's clear that he sees death straight ahead.

In AIDS science and policy, it's easy to lose sight of the human factor ... the people whose minds, emotions and spirits are as intimately affected as their bodies. People who are making personal decisions about their health and their lives.  Their decision to believe or not believe what purveyors of policy are telling them.  The decision to test or not test ... to treat or not treat. Or how to treat. "AIDS" is not some scientific abstraction out there.  It is a vast psychodrama playing out in millions of human hearts.

As a writer, I always wonder about the human factor.  My friend faced some jarring human questions, as he sat alone and decided what to do next.

Treatment, for example.  Behind the scenes, many scientists, pharmaceutical executives and government officials are in a panic of their own because they know that drugs are going away. Many AIDS drugs, as well as many drugs used to treat other diseases, have been over-used by long-term treatment.  The World Health Organization admits bluntly: "The effectiveness of these drugs is diminishing as drug-resistant microbes develop and spread."  WHO is talking about resistant strains of TB, staph and dozens of other infectious agents.  How will health-care professionals and public-health officials keep up their refrain that one MUST be treated with recommended drugs if the drugs are going away?  

Right now many HIV researchers and health-care professionals are trying to fill the gap with tests that supposedly determine resistance to specific drugs, but a HPC friend of mine admits that this is a feeble measure. According to IAPAC, common shortcomings of resistance testing include "unreliable standardization, variable reproducibility of testing methodology, disorganized or confusing reporting formats for test results, lack of physician expertise in interpretation, excessive cost, and limited access." Translation:  who will pay for it, and is it even reliable?

Drug resistance isn't news.  It has been known to medicine for four decades. When I was treated for Lyme disease in the early 90s, long-term Lyme treatment with antibiotics was controversial for this reason.  Some states actually introduced legislation that would outlaw long-term treatment.  Today the Lyme controversy still rages -- doctors in 7 states have actually been stripped of their licenses for prescribing long-term treatment.  Yet in AIDS care, human beings in government and biomedical jobs told the American people it was okay to use powerful antivirals for long-term treatment.

Some AIDS drugs are going away for other reasons.  Their ineffectiveness or dire side effects have been known for years, even documented in studies.  Yet drug advertising and public-health policy tried to minimize these facts.  Now the unpleasant evidence has piled so high that our government is finally eating crow.  In new guidelines published in January, the NIH no longer recommends HAART because of side effects.  

FDA admits to unacceptable side effects elsewhere as well.  For instance, among healthy healthworkers who got treated with nevirapine (Viramune) for needlesticks. Viramune's manufacturer finally had to notify health professionals of continued reports of "severe, life-threatening and in some cases, fatal hepatotoxicity." Recently, after three pregnant women died, the FDA warned about using a combination of stavudine (d4T) and didanosine (ddI), which may increase the risk of fatal lactic acidosis in HIV+ pregnant women. The FDA has sent warning letters to quite a few manufacturers for misleading advertising on AIDS drugs.

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