VIRUSMYTH HOMEPAGE

THE HUMAN FACTOR

By Patricia Nell Warren

A & U Magazine April 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.

So I wonder what many patients are feeling now -- the ones who trusted the government, their AIDS service organization, their doctor. They did what they were told and took their meds. Now they are side-effects cases, not just HIV cases. How do they feel about their buffalo hump, their need for a liver transplant? Are they angry, heartbroken? Do they feel betrayed?

I also wonder what human factor will erupt among AIDS service organizations who put their reputations on the line by recommending HAART, and by helping with access to clinical trials of new drugs. Do they feel betrayed or compromised? And what about their families, partners, supportive friends who also believed what they were told and now see the medical establishment doing a sudden U-turn?

Then there's the human factor abroad. As AIDS policy comes unglued in the U.S., these same drugs are being discounted into developing countries around the world. The U.S. government has acted like a paid lobbyist for pharmaceutical companies, pressuring poor countries to pay for imported drugs rather than manufacture their own. Zambia just became the third African nation to negotiate a deal with five pharmaceutical corporations. Nevirapine is now being used on South African HIV+ mothers and babies. This is not a new gambit. Powerful agricultural chemicals were also marketed into developing countries once their use was outlawed or unpopular in the U.S. How will black Africans feel when they start experiencing the side effects of drugs made by white foreigners? How will they feel when they see the side effects in their children?

More to the point, how will their governments feel? Will a few U.S. embassies get burned down? I wonder if our government has a clue what it's risking by pushing pharmaceutical drugs abroad that "aren't working now" in the U.S.? Many major media support AIDS policy, so they are rushing to do damage control. On 1/22/01 "Sixty Minutes" hinted that gay and bisexual men might be held more accountable for their sex lives now that the drugs are going away. CBS made a big thing of alleged new "sub-Saharan infection rates" in San Francisco (it neglected to mention that the S.F. Dept. of Public Health statistics are being challenged as deliberately inflated in order to get funding...as are similar new figures for young black gay men across the country).

The same threat of "escalated accountability" also faces non-gays who happen to have that X on their piece of paper. How will they feel when the government finally takes off the velvet glove? With "effective treatment" waning as an option, and no HIV vaccine in sight, and a right-wing President in office, plus an Attorney General who is not only anti-gay but anti-contraception (meaning he doesn't approve of condoms), it doesn't take a rocket scientist -- or even a virologist -- to see that legislation will move towards harsher surveillance and restriction of sexual activity by HIV+ people.

The other day, after a month of silence, my friend called me up. He had calmed down somewhat, gotten a new job, and could laugh about his emotional funk. In his calmer state, he had been pondering the headlines about the drugs. As per my policy of never giving medical advice, I simply listened to what he had to say, like a journalist is supposed to do. "I'm looking at everything that's going on with the drugs," he said, "and I don't know what to think. So I'm not going into treatment right now. There doesn't seem to be any point."

A human response, to politics created by humans.

VIRUSMYTH HOMEPAGE