The Bay Area Reporter - February 25, 2000
Tim Horn and Linda Grinberg, ACT UP/Golden Gate Writers Pool

So begins Celia Farber's yarn of half-truths in the March 2000 issue of Gear, a glossy NC-17 magazine for the post-feminist straight guy (think fraternity house bathroom material). Beneath cherry-picked, out-of-context quotes from some eminent HIV/AIDS researchers, lies a dark, sinister agenda. Farber seduces the unsuspecting neophyte with a few provocative remarks suggesting HAART is one big, fat, greed-driven lie that has needlessly left people living with this phantom virus crippled, mangled, deformed, and headed straight to the morgue.

"In reality, three years into the protease inhibitor craze, most people on cocktail therapy can barely function," fabricates Farber, formerly Spin magazine's HIV dissident mouthpiece for the flat-earth society of Duesberg disciples. And spin she does.

Farber's fiction was recently regurgitated in the form of a commentary posted to the ABCNews.com Web site by Nicholas Regush, an ABC producer who is peddling a new book. "Now science must confront this ongoing travesty," Regush rants, "a guinea-pig experiment not unlike those medical forays conducted by the Nazis." Let's back up a bit, shall we?

Numerous people living with HIV have been harmed by the drugs they take. In this sense, HIV -- and the treatments used to control it -- is no different than any other life-threatening disease known to man. Drugs can be toxic. But until proven otherwise, the tradeoff remains the lesser of two evils -- for AIDS has claimed the lives of over 16 million people, leaving an estimated 33.6 million ravaged in its wake.

HAART (highly active antiretroviral therapy) is not the Holy Grail. But, there's no denying that its virologic and immunologic benefits have been nothing short of miraculous for many. And then there are the side effects. Both short- and long-term toxicities abound. For those starting therapy, often there is diarrhea, nausea, and vomiting. Over the longer term, peripheral neuropathy frequently develops, as do liver and kidney toxicities and a long list of potential metabolic abnormalities.

Coping with severe side effects can be manageable at best, or reason for treatment cessation at worst. Whether the damage is irreversible is not yet known. Farber and Regush contend the drugs are poisoning us to death, repudiating the fact that the death rate has fallen precipitously with their widespread use. No one can deny the fact that those near death are now alive to complain -- loudly. As Jeff Getty of ACT UP/Golden Gate bluntly states, "I'd rather be alive with a paunch than dead and rotting in my grave."

We cannot overlook the ghastly side effects some people face. Patients and volunteers in clinical trials willingly offered up the last remnants of their precious health and lives -- the ultimate sacrifice -- in pursuit of a therapy to save themselves and others. Activists valiantly fought for early access to these drugs. The commitment of these brave souls has prolonged the lives of many and continues to bear fruit, albeit sometimes bitter.

Keeping the context

Missives from the misguided duo aside, accounts from within our ranks further muddy the waters. Reports of the incidence of lipodystrophy, a syndrome of metabolic complications believed to be a consequence -- either directly or indirectly -- of HAART are multiplying. Estimates range from 2 percent to over 80 percent of the HIV-infected population. But, as Martin Delaney of Project Inform points out, higher prevalence rates can be misleading. "A careful look at cohort data shows that lipodystrophy is being defined using any one of innumerable physical manifestations or lab test irregularities," he explains. "In some studies anyone with elevated cholesterol or middle-age paunch is included in the tally. Studies using more demanding criteria show vastly lower rates."

A handful of case reports confirming heart attacks among people receiving HAART cannot be compared to the devastation of the 1980s and early 1990s as we faced the loss of our loved ones to untreatable AIDS-related infections and our own mortality.

Learning lessons

An overzealous, insatiable press fed our hunger and desperation at the 1996 International AIDS conference in Vancouver, anointing Dr. David Ho our savior and Time's Man of the Year. His eradication theory, taken as gospel, was faithfully preached with missionary fervor. Hopes were dashed with the discovery of hidden, impenetrable sanctuaries of virus, virus capable of persisting for 60-plus years. Denouncing Ho a heretic, the media is ever intent on destroying the icon it created. Bashing HAART has become chic. In reality, the only debate going on about HAART is not whether to use it but when.

The United States Public Health Service and International AIDS Society-USA continue to advocate the "hit early" and "hit hard" approach. Yet the tide is turning. Dr. Keith Henry, medical director of the HIV clinic at Regions Hospital in Minnesota, argues in the most recent issue of Annals of Internal Medicine that, with the twilight of the eradication hypothesis, the utility of early therapy is becoming increasingly suspect. Henry and others claim that it's not too late to remand this important question to the realm of clinical research. In light of what is now known about side effects and lacking proof of the utility of early therapy, the need for improved treatment strategies and novel drugs is evident.

Farber and Regush shy away from the real debate and instead fabricate an Armageddon. By maligning HAART, they mask the true agenda they are promulgating -- that HIV is benign, not the cause of AIDS, and a pharmaceutical scam. To build a case, the drugs must be portrayed as the deadly enemy. Their continued benefit undermines their mission and there would be no story.

Farber is closely allied with a group of AIDS-naysayers, ACT UP/San Francisco that run a "medical marijuana dispensary" and actively try to convince people to go off drugs. They litter and spray paint the city with slogans claiming, "AIDS is over," "HIV is a lie," and "Oppose AIDS funding." They recently disrupted a Congressional hearing, proclaiming AIDS funding a fraud and a scam, and have gotten cozy with the Christian right and the Family Research Council.

Farber asserts, "Protease inhibitors were approved on small, short trials, in which results were virtually engineered." Failing to mention longer-term, larger studies conducted around the world that affirmed the profound value of the new therapies, Farber concludes, "The rush to get the new AIDS drugs on the market caused a near-total disintegration of the FDA drug approval process." Tell that to those whose lives were spared.

Yes, fat redistribution is horrific and these miraculous drugs may leave us wanting. But, let us neither deny our history, nor forget our past. Let us not forget the daily death toll in the obituaries or the weekly memorial services of years past. Let us not forget the macabre horror of witnessing the wasted, KS-riddled shells of almost an entire generation slowly going blind or mad, struck down in their prime. Let us not forget their names or their faces. Let us not forget the grim reality that AIDS is more lethal than any drug and that death is never pretty.
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