SCIENCE FICTION

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SCIENCE FICTION

By Celia Farber

 

Gear Magazine March 2000

 

 

In 1996 a scientist claimed he'd found a way to defeat AIDS. In the wave of

euphoria that followed, a batch of new drugs flooded the market. Four years

later, those drugs are wreaking unimaginable horror on the patients who dared to

hope. What went wrong?

 

It's telling, and perfectly symbolic that when AIDS researcher David Ho's face

appeared on the cover of Time as Man of the Year, 1996, you couldn't see his

eyes. Instead, a colorful swirl meant to represent HIV filled his glasses.

George Orwell used precisely this image -- a man whose eyes are gone, whose

glasses have been filled with the refracting light of his ideology -- to convey

the triumph of politics over truth in his famous essay Politics and the English

Language.

 

Ho, the then newly appointed director of the Aaron Diamond AIDS Research Center

in New York, was suddenly catapulted to a degree of fame that no other AIDS

researcher had ever attained, and gave him an oracular power over the press and

the AIDS community. The relentlessly driven son of Chinese immigrants, he was a

man singularly obsessed with HIV, and his vision was to attack it with a

ferocity never before imagined -- to bomb it with not one drug, or two, but a

literal hail. He popularized and largely pioneered the idea that would make such

pharmaceutical bombing seem rational -- that HIV, far from being the cryptic,

latent, quiet virus most researchers thought it was -- was in fact " replicating

furiously, " from the very moment of infection. The immune system, he claimed,

fought back valiantly, mass producing immune system cells in an effort to defend

itself, but in the end, the virus would win the battle, and the immune system

would collapse.

 

The only rational attack therefore, was to begin treatment as early as possible,

to defeat the virus. He was a man of simple concepts, and the one that would

alter history went like this: hit hard, hit early.

 

Ho's seductive experiment, which spread to newspapers around the world before it

was ever completed, was to knock back HIV to the point of being " undetectable, "

then take the patients off the " cocktail " of drugs, with HIV, hopefully,

banished for good. His recipe for a cure, a word that was heavily implied if

semantically avoided, was to create a blitzkrieg of chemicals -- a mixture of

old AIDS drugs like AZT with the new class of drugs waiting in the pipeline

called " protease inhibitors " -- to annihilate HIV in the bloodstream. Protease

inhibitors had been researched since the early 90s by the major drug companies,

several of which came close to abandoning the effort because the drugs did not

work against HIV.

 

But Ho was convinced that his new approach of mixing several drugs would work

where no single drug had succeeded, and that curing AIDS was a simple matter of

eradicating HIV.

 

Magazines and newspapers took Ho's central metaphor and reprinted it without a

second thought: AIDS is like a full sink with the drain open; the water pours in

from the tap at a slightly slower rate than it drains away. Eventually, the

water -- the T-cells of the immune system -- will drain away enough to cause the

immune collapse known as AIDS.

 

David Ho, Time magazine gushed, " fundamentally changed the way scientist looked

at the AIDS virus... His pioneering experiments with protease inhibitors helped

clarify how the virus ultimately overwhelms the immune system.

 

" Mathematical models suggest that patients caught early enough might be

virus-free within two or three years. "

 

David Ho, Time concluded, delivered " ...what may be the most important fact

about AIDS: it is not invincible. "

 

Based largely on a single paper -- Ho's 1995 paper -- protease inhibitors

received lightening-quick FDA approval and poured onto the market. The mass

media declared AIDS to be " over, " albeit with a question mark floating overhead.

A new euphoria filled the air, and David Ho spawned a multibillion-dollar drug

industry.

 

Amidst the excitement, something was overlooked.

 

Ho's mathematical model was wrong.

 

***

 

The phone rang late one night and Shawn O'Hearn, 33, a San Francisco HIV

prevention worker, answered it. It was an old friend, a successful dancer who,

although he had tested positive for HIV, had remained in perfect health.

Following the advice of the nation's leading AIDS organizations, he had begun

taking a cocktail of drugs including protease inhibitors, even though he didn't

have any symptoms of disease. Four weeks later, he suffered a stroke.

 

" I'm paralyzed, Shawn, " he told O'Hearn.

 

He'll never dance or even walk again.

 

This is not a rare story; it is a common one in the age of AIDS drug cocktails

(as the combination treatments championed by Ho have become known). Such

tragedies are seen as an inevitable " side effect " of a drug regimen so punishing

that an entire surveillance system has been put in place to ensure that people

stick to it. There are computer chips embedded in bottle caps that record the

date and time of each opening. There are beepers, support groups, buddy systems,

observation centers where patients take the drugs while being watched, and even

groups of AIDS professionals who infiltrate people's social networks to enlist

them to help promote and dispense the drugs. They call it " treatment

compliance, " and it has largely replaced Safe Sex as the core social imperative

of the AIDS industry. The goal is to get as many HIV-positive people on the

drugs as possible, whether they are sick or healthy, and to keep them on them,

through debilitating ill effects, which are dismissed as a small price to pay

for the benefit of lowering the amount of virus in the blood. But now, four

years after the initial AIDS cocktail drug hype erupted, the utopian promise is

fast turning into a nightmare.

 

" I started to notice that more and more friends, young people, were suffering

these mysterious strokes and heart attacks, " says O'Hearn, a member of the HIV

Prevention Planning Council in San Francisco.

 

" They are listed as AIDS deaths. But those are not AIDS deaths, those are drug

deaths. "

 

San Francisco is a crucible for the new schism in the AIDS community. The city's

AIDS culture has long been characterized and dominated by the mainstream

organizations which advocate drug regimens for all HIV-positive people.

 

One group that stands in stark contrast is ACT UP San Francisco. The group has a

clientele of about 1,200 people with HIV looking for advice, support, and

medical marijuana to ease their pain. " What is going on? " I ask member David

Pasquarelli. " What are you seeing? " He is quiet for a moment.

 

" Death and deformity, " he says. " Deaths from strokes, heart attacks, and kidney

failure. We've lost probably half a dozen clients from sudden deaths in the past

year. We've also seen at least 30 people that have distended bellies and

hunchbacks from taking the drugs.

 

" I had a guy come in just last week and he was crying. I said, 'What's wrong?'

He said that his roommate of 10 years had died suddenly, after going on cocktail

therapy. "

 

There are facts and figures, studies and counter-studies, a virtual blizzard of

data that could be arranged to show any number of things. The new AIDS drugs

have saved people's lives: that's one piece of truth. The new AIDS drugs have

killed people: that's another. The new AIDS drugs have damaged and deformed some

people so badly that although they are alive, they wish they were dead.

 

" Everyone keeps saying these drugs are extending lives and saving lives and

we're supposed to believe it, " says Pasquarelli. " I had this woman on the phone

today from HIV Plus magazine and she said, 'Protease inhibitors are causing

people to live longer,' and I said, 'No they're not. Everybody who is taking

protease inhibitors is contributing to one big medical experiment. And no one

knows the outcome of it.' "

 

Pasquarelli's group recently unearthed a 1997 study by San Francisco Health

Department director Mitch Katz which exposes a shocking statistic which would

appear to dispel the claim that the cocktails have caused AIDS deaths to

plummet. Using stored blood samples and computer analyses, the study, published

in the Journal of AIDS and Human Retrovirology, concluded that new HIV

antibody-positive diagnoses peaked in 1982 in San Francisco -- two years before

HIV even had a name.

 

" There's a big problem in terms of looking at this as a contagious epidemic, "

says Pasquarelli. " HIV positive diagnoses for the past 13 years here have

remained steady at 500 cases a year. People don't look at the chronology of

this, or at the statistics. They just have it in their heads that these drugs

save lives, and that's it. " (Katz has since confirmed the group interpreted his

data correctly.)

 

And, Pasquarelli points out, on a national level, AIDS deaths began dropping at

the end of 1994, at least three years before the drugs hit the market, a fact no

one disputes.

 

***

 

" There is absolutely no question whatsoever that protease inhibitors have helped

people, " says veteran AIDS doctor Joseph Sonnabend, co-founder of AmFAR, now

practicing in New York's Greenwich Village. " But they've probably hurt more

people than they've helped. That's why it's complicated. The people for whom

benefit has been proven beyond a doubt are really sick people who would have

died without them three years ago. But the target population for the drug

companies are the healthy people, and those people will almost certainly have

their lives shortened by these drugs. "

 

It was precisely those healthy people who were the primary target of David Ho's

eradication campaign. Time enthusiastically exhorted: " HIV-positive patients

would have to start taking the drugs immediately after infection, before they

realize they're sick. " Ho's mantra, " Hit hard, hit early, " ushered in a new

machismo in AIDS treatment, where people seemed to measure their own self-worth

by how long they could endure the devastating drugs.

 

" I have personally seen what was being called the Lazarus effect [where

chronically ill people rise off their deathbeds], " says Dr. Michael Lange, chief

of infectious diseases at St. Luke's-Roosevelt Hospital in New York. " But I

would also say that many, many people are being badly harmed by them. Also, the

regimens are so complex and hard to stick with. "

 

" In my experience, I have seen that those who do not take any of these AIDS

drugs are the ones who remain healthy and survive, " says German physician Claus

Koehnlein, who recently testified this past December at the trial of a Montreal

woman who refused to give her HIV-positive children cocktail therapy, and then

in a chilling Orwellian scenario, had them taken from her and placed in a foster

home where they are being forced to take the drugs.

 

" I treat the individual symptoms -- the whole person, not just the virus. I

treat them for whatever they are suffering from, and that's that. I have not

lost a single patient in seven years and I've never used cocktail therapy. "

 

Precisely what it means for a life to be " saved " is complicated, especially when

the patient was not sick to begin with. As Koehnlein wryly commented, " If you

treat completely healthy people you can claim great therapeutic success. "

 

" The vast majority -- about 75 percent -- of people who go on these drugs are

completely healthy, " says Dr. Steven Miles, AIDS researcher and doctor at UCLA

Medical Center.

 

" Large numbers of people are being inappropriately treated with drugs they don't

need. And their lives are probably being shortened, yes. "

 

At Lemuel Shattuck Hospital, Massachusetts, a review was done on every

HIV-positive patient who died at the hospital between May 1998 and April 1999,

and compared to a group of patients who died in 1991, before drug cocktails were

available.

 

Of the 22 " post-cocktail " deaths, half died of liver toxicity from the drugs,

and two more had liver toxicity listed as a secondary cause. The study concluded

that liver toxicity was " now the leading cause of death among HIV-positive

patients at our institution. "

 

In other words, allegedly life-saving AIDS drugs are killing AIDS patients at

this particular hospital.

 

Hospitals around the country are reporting radical increases in heart attacks,

strokes, diabetes and other complications caused primarily by the drug's

interference with the body's natural ability to metabolize fat. This is also

causing the fat redistribution that leads to humpbacks and huge torso in men,

and gigantic breasts in women. At the same time, fat disappears from the face,

arms and legs, rendering patients stick-like.

 

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