By Matt Smith
SF Weekly 3 Jan. '01
New U.S. guidelines suggest that powerful anti-viral drug combinations
should be used later, rather than earlier, in treating AIDS.
In a "To Our Readers" column accompanying its 1996 Man of the Year
issue, Time magazine President Bruce Hallet noted that the man in question,
AIDS researcher David Ho, panicked upon learning what his interviewers had
"Does that mean I'm Man of the Year?" Ho gulped (as observed by
Hallet). "That makes me very uncomfortable."
Not to worry, Hallet wrote; Ho "relaxed when convinced that his
experiments with the new antiviral "cocktails' would not be touted as a
The doctor shouldn't have been so easily assuaged. Time's Man of the
Year package may have accurately depicted Ho's research, which showed that
a narrowly defined group of AIDS patients responded well to a combination
of anti-virus medicines. But Ho's lionization spawned a virus of global
hyperbole that rapidly spread through the media, mutating, it seemed, with
By dawn the next day, the story of Ho's new status was appearing in
papers all over the world without the specificity or the subtlety of Time's
7,000-word Man of the Year opus. The Scotsman in Edinburgh, like papers
everywhere, posed the headline question, "Can this man wipe out AIDS?" It
left readers to surmise, "Perhaps."
What happened next -- a near half-decade of medical missteps, a plague
of unnecessary suffering resulting from inappropriate early use of toxic
anti-viral drugs, and wave upon wave of confusion, dissension, and despair
among doctors and their patients -- actually amounts to the best Western
medicine's got when it comes to battling an unfathomable disease such as
AIDS. That's because the progress of medicine is more -- or less, depending
upon how you look at it -- than just high science. It's high science
filtered through journalism, scientific dissent, and a constantly changing
state of the curative art. The resulting serum is injected into the
doctor-patient relationship, and informs thousands of medical decisions,
some lifesaving, others disastrous.
This month, the federal government will issue AIDS treatment guidelines
that represent a partial repudiation of science described in that early
Time article. How the medical establishment arrived at this new state of
common wisdom during the previous four years is an apt illustration of the
constructive and destructive ways culture informs the manner in which
doctors treat patients.
Ho had rejected the common view that the AIDS virus lay dormant for a
period before attacking the body, saying the body and the virus are
actually locked in a pitched battle from infection on. Therefore, he
theorized, it was best to attack the illness as early as possible with a
highly toxic dose of medicines, including newly developed protease
inhibitors, which stopped the virus from making copies of itself. By
hitting the virus early enough, and hard enough, it was believed that it
might be possible to completely wipe it out. AIDS, it was briefly believed,
might soon be cured.
"That was a brief period of euphoria after a long period of dark
despair," recalls Paul Volberding, professor of medicine at UCSF and
director of the Positive Health program at San Francisco General Hospital.
It's been four years since that false AIDS spring of 1996, and American
ideas about treatment of the disease have traveled a long, circuitous
route. Researchers found they couldn't actually eradicate the disease, but
only beat the AIDS virus back to manageable levels. They found that
anti-viral cocktails cause fat to collect in some people's bodies in
bizarre ways, creating bowling-pin torsos and buffalo-hump-like necks. They
encountered patients with neurological problems, diabetic symptoms, anemia,
headaches, nausea, weight loss, dry mouth, and hair loss -- all symptoms
associated with AIDS drugs. The side effects of AIDS treatment, it was
learned, can themselves cost thousands of dollars per year to treat.
Doctors also found that it can be devilishly difficult to keep patients
on complicated drug regimens -- particularly when the drugs cause severe
side effects, while the disease those drugs are supposedly treating isn't
yet showing significant symptoms. Perhaps most frustratingly, they
discovered that the lingering news cycle left over from the false AIDS
spring had led some gay men to justify being less careful about their sex
The cumulative result has caused the medical establishment to back away
from the hit-it-early, hit-it-hard doctrine. Doctors still agree it's
necessary to use powerful medicines to beat back AIDS. But they no longer
believe that it's always, or even usually, appropriate to attack the
disease early. And some AIDS treatment experts are now acknowledging that a
part of the focus on early treatment may have been driven more by hype than
solid science, and that the early use of drugs with powerful side effects
caused years of suffering that could, and should, have been avoided.
Next month, the U.S. Department of Health and Human Services will
release a revised set of HIV treatment guidelines that represents the
culmination of a four-year-long retreat from Dr. Ho's initial ideas about
AIDS. The new guidelines are a significant shift of popular medical wisdom
about the proper use of AIDS drugs. They will recommend holding back from
using powerful anti-viral drugs until the immune systems of HIV patients
show significant signs of decline. In essence, the guidelines acknowledge
that the precipitous use of protease-inhibitor-laced anti-viral cocktails
may actually do more harm than good.
According to the new guidelines, patients should not get "triple
therapy" -- a protease inhibitor and two older anti-HIV drugs -- until the
number of T-helper immune cells falls to fewer than 350 per milliliter of
blood. The normal level is around 800. Older guidelines advise that triple
therapy treatment should begin when T-helper cell levels fall to 500 per
milliliter of blood.
"It's pretty much of a sea change," says Mark Harrington, senior policy
director for Treatment Action Group, a New York-based advocacy organization.
"It's an accumulation of all the side effects we've seen," says
Volberding, who's on the government committee that wrote the new federal
guidelines. "There were neuropathologies, some suppression of red blood
cells that would cause anemia. There were some drugs that caused kidney
stones or skin rashes. There are a number of potential side effects, but
it's not as if those are so horrendous we can't work with them; we do. But
we recognize we don't need to use the medicines as early as we thought."
For San Francisco physicians at the forefront of global AIDS treatment,
the new guidelines will come as no surprise, says Martin Delaney, founding
director of Project Inform, an S.F. AIDS information advocacy group. Here,
doctors, researchers, activists, and patient groups join in a constantly
evolving debate about treatment strategies. The result has been an amalgam
of the latest science and current understandings of patient needs. With the
goal of a cure out of reach, medicine now seeks the best possible
compromise between disease control and quality of life.
"A lot of doctors in San Francisco have backtracked, and are
withholding treatment until much later, and there's sentiment with the
patients not to start until much later," says Delaney, who is also a member
of the government committee that drafted the new guidelines.
New medical technologies allow doctors to closely monitor the amount of
virus in a patient's bloodstream, so there's less danger in waiting to
battle the disease with drug cocktails. New knowledge about the immune
system's ability to recover following a battle with HIV has also allowed
doctors to postpone drug treatment. The new AIDS thinking isn't all the
result of bad news -- the fact that the protease-inhibitor-based cocktails
have proved effective has allowed doctors to employ the drugs later in the
game, confident that they will still have a strong chance of beating back
But the new government advice may come as a surprise to doctors
unversed in the latest in AIDS research, Delaney says.
The hit-early, hit-hard idea found a ready audience with doctors who
felt humbled by this baffling disease, doctors and activists tell me.
Doctors, like other human beings, are wont to prefer action to inaction.
And Dr. Ho's early research results, combined with the hopeful period that
followed, may have led some of these physicians to be too hasty with toxic
AIDS cocktails, AIDS activists are now saying.
By the time Ho's early findings were washed through endless media
reports and misstatements in community newsletters, the message was
delivered that everybody infected with HIV should be on multidrug treatment
-- but there was never any data to support that notion, Delaney says. "It
was how the interpretation sifted through the culture. Doctors picked up on
the culture rather than the science," he says. "There were a lot of people
who went on treatment too early, before there was any evidence that you
could help them."
But that experience has informed a new way of thinking about AIDS. Now,
patients infected with AIDS will suffer less and have a better chance at
survival. That's medicine. That's culture. And that's AIDS.