The word that most ubiquitously appears near
the word AIDS is “war.” The now 26 drugs, in four classes that have been
marketed to tackle the elusive, endlessly cunning virus have been described as
the armamentarium in this war. In addition, there are scores of drugs
that have been developed to offset the side effects of the anti-HIV drugs.
The battleground for the war on AIDS is the human body -- now almost exclusively human bodies in the developing world -- and those who advocate conventional AIDS drug regimens share a belief that any degree of destruction to the human body is still preferable to allowing the virus to go unchecked. They repudiate any and all research pointing to the possibility that being HIV antibody positive may not mean that a person will get sick or die. There is no natural history of HIV “infection,” (in quotes because antibodies may not signal true infection.) Prior to the 1986 approval of the first AIDS drug, an old chemotherapy drug that became re-named AZT, men who had PCP pneumonia and Kaposi’s sarcoma, the skin cancer that once was the hallmark of AIDS, were treated with potent chemotherapy regimens. It was assumed at the time that they died of “AIDS.” From 1986, AZT dominated the treatment market until its sudden demise after the results of a damning study in 1993 (the one and only large scale study not funded by its maker.) A few other drugs in AZT’s class—nucleoside analogues—were in vogue in the mid 1990s, followed by a sudden paradigm shift in 1996, when Dr. David Ho became TIME Magazine’s Man of The Year for a “whole new way of looking at the virus.”
Ho, drawing on a mathematical model that was later proved faulty, “proved” that HIV, far from being latent and only infecting a few cells, was constantly draining the body of its immune system cells, which the immune system then regenerated in a furious attempt to compensate. Ho ushered in a new draconianism and even masochism in HIV treatment, that became known as “hit hard hit early,” which meant starting on punishing drug regiments as soon as you test positive. The idea that then took hold was that several drugs in combination might do what no single drug could do. This was the dawn of “cocktail therapy,” which in the AIDS research community became known at Highly Active Antiretroviral Therapy, or HAART. With approval times as short as six weeks, and very low standards for proving “efficacy,” (a bump up in CD4 cell counts or a reduction in “viral load” was enough) the market was opened up between several pharmaceutical companies, breaking the previous near monopoly held by AZT’s maker, GlaxoWellcome.
Each of the 26 anti-HIV drugs, combined in infinite combinations, or “cocktails,” is, by admission of the manufacturers, potentially lethal. Their toxic effects are comparable only with chemotherapy drugs, and many of them are simply chemotherapy. Some are of course more toxic than others, and they rise and fall in popularity. AIDS professionals can stay busy for the rest of time fiddling with the infinite combinations and the NASA-grade technical myopia about what each new drug combo seems to do to the various surrogate markers measured in the blood. AIDS drugs are not judged by clinical effect—only their effect on what is perceived as HIV’s noise and activity in the blood—CD4 counts and ‘viral load’ chiefly.
Of the 26 anti-HIV drugs on the market today, Glaxo has eight, Bristol Myers Squibb has five, Hoffman LaRoche has four, Gilead has three, Abbott has two, and Merck, Pfizer, Agouron and Boehringer Ingelheim each have one.
At the peak of cocktail therapy excitement, in the late 1990s, Andrew Sullivan wrote a cover story in the New York Times Magazine called “When Plagues End,” which suggested that the new drugs were turning AIDS in the gay community into a chronic infection, something you could live with, and that AIDS as we knew it, (as Sullivan’s circle knew it,) as a death sentence, was over.
Sullivan’s article ignited a furor in the “AIDS community” who don’t take kindly to suggestions that AIDS could ever be “over,” and who complained that this would cause gay men to become complacent.
The zeitgeist did shift, either as a result of or simultaneously with Sullivan’s article, and AIDS became a pharmacological festival. A rain of drugs, and their management, and a strange kind of combined fear and worship of them, which was a response to the fear of HIV. People had timers and beepers telling them when to take their “meds” and were instructed to take them all at different times, some with food, some with fat, some with orange juice, etc. People who couldn’t stand the toxic effects of the drugs were helped by “buddies” assigned by AIDS organizations who helped them stay motivated and/or called at all hours to remind them it was pill time.
Articles were written about the glory of the new drug, about the “Lazarus effect,” and several journalists were rewarded with Pulitzers for their brave and conscientious reportage -- including Laurie Garrett of Newsday, Michael Waldholz of the Wall Street Journal, and Mark Schoofs at the Village Voice (now at WSJ.)
They stopped reporting when the drugs started to prove lethal. One “side effect” nobody foresaw was that the drugs, so-called protease inhibitors, would throw off the body’s capacity to metabolize fat, which caused the fat to “redistribute.” People started to manifest strange body morphings—the fat drained from their faces, legs and arms, and pooled in humpbacks on the upper back and neck. Some developed “santa bellies,” and women got gigantic, engorged breasts. That was dealt with; plastic surgeons in cities like San Francisco started to specialize in plastic surgery to remove these fatty deposits. But worse than that was the other surprise side effect: People were now dying from strokes and heart attacks, even as their surrogate markers, their measures of T cells and HIV levels, were looking great, i.e. in theory, they should be winning the battle. But instead they would drop dead on their way to work.
The other significant danger of HAART proved to be liver and kidney failure, which according to a study done at the University of Colorado Health Sciences Center, “surpassed deaths due to advanced HIV,” in 2002.
There was no reaction to this in the “AIDS community” which has never lost faith in its core belief that AIDS drugs, even when they are lethal, are better than nothing, because HIV itself is always, to their way of thinking, deadly. Death from AIDS drugs was woven into the range of normalcy in AIDS culture, and the drugs only became more sought after, in “newer and better combinations.”
At the same time, the marketing strategies for AIDS drugs shifted. Now the campaign themes were geared toward the pre-AIDS themes of levity, freedom, and privilege among urban, upwardly mobile gay men. The doom was lifted. In a recent marketing campaign for an HIV drug called Reyataz, there is an embedded mini-speaker which, when you open the ad’s fold, rings like a cell phone. You hear a man’s voice say, with an upbeat, let’s party laugh, “He heey we’re at the beach. Catch you later!” The image shows two gay men on a beach, laughing, one of them in a straw hat.
The San Francisco Department of Health reported only 245 cases of AIDS for the year 2004. That’s HIV/AIDS “culture,” in the year 2004/2005, in the west, in places like New York and San Francisco.
In 1992, there were about 98,000 AIDS organizations in the United States. In the UK at one point, there was one AIDS charity for each HIV positive person.
These organizations sprang up like weeds at the peak of AIDS hysteria, in the early 1980s, but then AIDS failed to spread along the wildfire patters that were predicted -- along the lines of sex. Many of the AIDS professionals and organizations dissolved, but many stayed in business, and even grew. The ones that are still around today are, without exception, funded by the pharmaceutical companies that depend on them for propagating their AIDS drugs. Yet remarkably, the old terms persist, and these professionals are still referred to as “AIDS activists.” The “AIDS activists” have woven themselves into a tight bond with both the government and the pharmaceutical industry, presenting a united front and speaking with essentially one voice. This phalanx of interconnected interests has little or nothing to do in the west, where AIDS cases are scarce, so the new battlefront of recent years is the Third World, where there seem to be infinite possibilities for expansion.
In AIDS, as in military wars, death is ennobled by the necessity of battle, and the force that propels it all, the thing that above all else must not be questioned, is the virulence and evil of the enemy.
In mid-February of 2005, there was a weeklong meeting of something called the HIV Prevention Trials Network, a central organ to DAIDS, focusing, like so many of these seemingly infinite branches and subdivisions and working groups of the AIDS research industry, to eradicate HIV around the planet, in people born or not yet born. But there is a very key question nobody ever asks in discussions about AIDS abroad.
What counts as “being HIV,” or “living with HIV” in, for example, Africa?
definition of AIDS in Africa, known as the Bangui definition, is
indistinguishable from the symptoms of tropical diseases and poverty, including
TB and malaria. The four main symptoms
are: fever, diarrhea, persistent cough, weight loss. Many African countries,
Uganda for example, can't afford any HIV testing. They diagnose “AIDS” by
looking at the patient for Bangui symptoms. When there is a blood test, it is
the cheapest test available, the so-called ELISA test, which is never used
solely in any Western country to diagnose HIV infection, and in fact cannot
The following facts will strike the reader as incredible, but unfortunately they are true. The reason we think Africa is "ravaged" by AIDS is due to statistical projections out of WHO's computer modeling in Geneva, which in turn are based on small samples taken from pre-natal clinics. Nothing but “extrapolations.” And extrapolations from what? The superior HIV test, the so-called Western Blot test, cross reacts with proteins that are not HIV proteins, including those for pregnancy, and including those for malaria and TB. The ELISA test is so unspecific as to be biologically meaningless, and it is never used in western AIDS contexts to diagnose AIDS. If a westerner received an AIDS diagnosis on the basis of a single ELISA test potentially they would have a multimillion dollar lawsuit on their hands. And yet this is the test that plunges countless Africans into a psychic death sentence, and allows for the astronomical, apocalyptic, and utterly fictional figures that bombard us about AIDS in Africa.
It is also the diagnostic tool that causes thousands of Third World people to become vulnerable fodder for NIH’s 400 plus AIDS drug trials.
And now even that flimsy barrier has been broken down. The new research frontier in Third World populations is HIV negative people.
The euphemism that legitimizes this new realm of human research is “pre-exposure prophylaxis,” which means that you test drugs on people who are ‘at risk’ for HIV infection to try to make a case that a particular drug, should they remain HIV negative, actually thwarted the antibody conversion.
It was Jonathan Fishbein’s job at DAIDS, to red light or green light these kinds of trials in the Third World. He told me once about one that could serve as a perfect model for everything that is sinister about the NIH foreign drug testing culture: A group of investigators working in collaboration with for Gilead Pharmaceuticals, in association with UCSF, developed a protocol, and received initial approval, for a trial testing Gilead’s drug Tenofivir on HIV negative prostitutes in Cambodia. The idea was to assert that the drug might prevent them from seroconverting to HIV, should they come in contact with HIV. Needless to say, there would be no earthly way of knowing that they ever might have seroconverted if they didn’t on the drug.
Fishbein had several concerns, the first of which was that the population they wanted to test on might be underage or even children. “You can’t reliably confirm the ages of people in places like Cambodia,” he says. “Prostitutes are typically twelve years old. They may not even know their real ages, or they may not tell the truth.”
The investigators came back to him and said they had a “mechanism” for solving this challenge. They argued to Fishbein that they would ask the recruited trial subjects what the Chinese symbol was the year they were born. Then they would ask them again the next time they came in, and see if they answered correctly, in which case the NIH could be assured they were not actually children.
Fishbein’s other main concern was that the young prostitutes, particularly brothel-based ones, would not be adequately protected from violence in the hands of their johns, who would probably beat them up to obtain the study drugs, which he described as a ‘commodity.’
The investigators kept pressing to be
permitted to go ahead with the trial, but Fishbein was ultimately relieved of
the decision by a surprise turn of events. “The Cambodian prostitutes are
actually very well organized,” he tells me, “and they protested at the
IAS Meeting in Bangkok in 2004. “They said they wanted more
information about possible side effects and assurance that they would be cared
for if they had an adverse event.”
Well that did it. The investigator, Kimberly
Paige-Shafer callously remarked to the Associated Press:
"There’s probably no place in the world where women in clinical trial have access to coverage for life. So I have to decide if I want to work on insurance coverage or on HIV prevention."
At the same time, the Cambodian Prime Minister nixed the study. I breathed a sigh of relief for those young girls who got away unscathed by Tenofivir. “So, the trial was cancelled?” I said hopefully.
“No,” Fishbein said, just when I think he couldn’t possibly shock me more.
Dr. Fishebin isn’t quick to condemn the whole culture, but when I press him, naively perhaps, to tell me who are these people, and do they really believe they are doing good, fighting AIDS, whatever, he answers with the same matter-of-fact precision.
“There’s a big trough of AIDS research money,” he said, “and a relatively small community of investigators who view it as an entitlement. These guys need to keep their grants and continue to publish, in order to maintain their stature at major academic research centers. and in turn thousands of people are employed by the AIDS industry because of that money. For this reason AIDS can never be cured. What would happen to thousands of highly educated people who rely on that money for their livelihood?”
I ponder the fact that that obscene trial was only stopped by the feisty and well organized prostitutes in Cambodia, and shudder to think what went on in Nigeria. Or any of the other dozens of countries these trials take place, that we never hear about.
The trial that truly paved the way for all of them, that showed just exactly what you can get away with in the Third World, the trial that, “struck gold,” for its principal investigator, and gave the AIDS industry its most triumphant moment perhaps in history, was HIVNET 012. It is microcosm of everything you’ll wish you never knew about the global AIDS research industry (and forms the basis of this article in Harper's).
This essay is dedicated in loving memory to Prof. Sam Mhlongo, who perished tragically and suddenly in a senseless road accident in South Africa earlier this month.
© 2006 Celia Farber
Swedish born Celia Farber is widely known "as the world's most dangerous AIDS reporter". Serious Adverse Events: Uncensored History of AIDS, a selection of over 20 years of writing, in a tradition that includes George Orwell and Hunter Thompson, has recently been published by Melville House.