Bad Science

They once thought HIV was harmless. Now, they say, AIDS has forced them to reconsider

by Bruce Mirken, January 26, 2000
The San Francisco Bay Guardian

FOR YEARS SAN Franciscans have heard from a small but vocal group of
activists who claim that HIV is harmless. AIDS, these dissenters say,
is caused not by a virus but by "lifestyle factors" – chiefly
recreational and medical drug use. The medical establishment, they say,
is either misguided or murderous for advocating the use of toxic
anti-HIV drugs.

The "AIDS dissident" movement has been around for well over a decade.
For the most part, it has remained on the fringe, wearing the disdain
of mainstream scientists and AIDS activists as a badge of pride.

But in the last year, the movement has been challenged from within – by
former believers who, in keeping with dissident orthodoxy, had scorned
and avoided recently developed AIDS therapies.

Now some of them have themselves gotten sick with AIDS. They say their
belief that HIV couldn't hurt them put their lives and the lives of
their lovers at risk. One even goes so far as to compare his former
movement to a cult.

Medical mistake

Ever since HIV was identified as the cause of AIDS in the mid '80s,
some have cast doubt on the connection. Early HIV skeptics included
pioneering New York AIDS activist Michael Callen and his doctor, Joseph
Sonnabend. In the late 1980s, Prof. Peter Duesberg, a prominent UC
Berkeley virologist, began arguing that HIV could not cause AIDS.

Although such theories have been consistently rejected by mainstream
science, they have nevertheless spawned an energetic movement that has
been highly visible in the Bay Area. Members of ACT UP San Francisco –
a renegade group that long ago split from the rest of the AIDS activist
movement, including ACT UP Golden Gate – plaster the Castro with
stickers bearing slogans like "Don't Buy the HIV Lie." And last spring,
an L.A.-based group called Alive and Well ran a series of full-page ads
in Bay Area papers, including the Bay Guardian. The ads called AIDS
"not a sexually transmitted epidemic but a tragic medical mistake" and
argued that rather than HIV, "well-known non-contagious factors are
what make people sick."

Until last January, Sean Current was an ardent member of the dissident
movement. In the early 1990s, as a staffer at a Massachusetts group for
HIV-positive people, he brought Duesberg to speak at a meeting. Later
he traveled around the country speaking at meetings of Health Education
AIDS Liaison (HEAL), a network of HIV skeptics. He introduced himself
as "someone who was HIV-positive for a long time and had never been
sick" despite shunning anti-HIV drugs – living proof that HIV was
harmless.

"I accepted completely as truth that the dissidents were right and that
we had been misled," Current, who now lives in San Diego, recalls.
Because he had used recreational drugs only rarely and in the distant
past and never took anti-retrovirals except for a five-week stint on
AZT in 1990, Current believed he was not at risk for AIDS. And because
he believed that HIV was harmless, he was certain that he and his lover
Sebastien, who was HIV-negative when they met, did not need to always
practice safe sex.

About two years ago, Current developed a Kaposi's sarcoma lesion and
began experiencing fungal infections and other problems commonly seen
in AIDS patients. His belief in dissident theories kept him from seeing
what was happening.

"I knew what a K.S. lesion was," he says, "but where I was coming from I couldn't believe that's what it was."

The turning point came when Current had trouble breathing and was
diagnosed as having K.S. in his lungs. He turned to other dissidents
for advice and, receiving nothing he considered an adequate answer,
sought conventional treatment. In October he began highly active
anti-retroviral therapy (HAART) – taking a combination of drugs to
attack his HIV.

"After two weeks of HAART and the chemo, my lesions had all flattened
out and I could breathe again," Current says. "I feel much, much
better. Within the first month my energy level increased."

Now Sebastien has begun to suffer some of the same symptoms Current
experienced. Current says his lover never used drugs and has none of
the behavioral risk factors the dissidents claim cause AIDS – but they
did at times have unprotected sex.

"I brought Peter Duesberg into my home, my town, to speak," Current
says with obvious pain. "I had just met Sebastien and I introduced him
to Peter, and over a few months Sebastien became a believer. I have to
live with that."

Reasonable doubt

One of the people Current met while speaking at HEAL meetings was Egan,
a Seattle 28-year-old who asked that his last name not be used for
family reasons. Egan, who tested positive for HIV in March 1996, says
he quickly became an "ultra-dissident" after attending a HEAL meeting
that fall.

But the next year, after two HEAL members died, Egan began to have
doubts. When Current got sick and yet another HEAL member he knew died,
those doubts accelerated.

"This was the third person in a year that had died in a small dissident
circle," Egan says. "Being gay, I know a lot of people with HIV and
AIDS. I had never personally known anybody outside of the HEAL or
dissident groups who had died." He began to suspect that what
dissidents scorn as "the orthodoxy" had a better handle on what was
happening to his friends than the dissidents did.

In 1998 Egan began experiencing his own health problems, including the
same kind of fungal infections Current suffered. His CD4 count – a
measure of the strength of the immune system that orthodox HIV medicine
considers crucial – had plunged below 200, officially qualifying him
for an AIDS diagnosis. He, too, went on a three-drug HAART cocktail.

"Within five weeks I noticed a dramatic change for the better in my
health and energy, and my blood work reflected this," Egan says. "I bet
the dissidents could find some way to explain this – they always do –
but to me it made perfect sense: the meds were helping me get better,
at least for the short term."

Closed minds

When they began discussing their experiences with fellow dissidents,
Current and Egan say, they were often met with hostility and scorn –
especially when they suggested HIV might be playing some role in their
illness. When Current began circulating e-mails asking for ideas, Alex
Russell, assistant editor of the British dissident journal Continuum,
advised him that "you are not 'HIV positive,' nor is your partner; nor
is anyone worldwide. Give up your 'HIV' status-identity and get a
life."

After a number of what he considered unproductive exchanges with
prominent dissidents, Current penned a furious description of the
movement's reaction to the "inconvenience" of people such as himself:
"a) Debunk the guy's credibility. b) Find several arbitrary factors
that may perhaps be present in his life to attribute this decline in
health to. c) Chastise him for not following a more wholesome lifestyle
(any dissidents out there want to order a pizza?) d) Harangue him for
any medical choices he might make that counter the party line. e) Then
claim they don't have all the answers and that the dissidents are not
missionaries."

Very few dissidents, Current says, have actually tried to engage him in
a meaningful dialogue about his experiences. Similarly, when Egan
started raising questions in HEAL Seattle, "it wasn't a hostile
environment by any means, but it certainly didn't seem like a lot of
the dissident information was up for examination either." Leaders
tended to scoff, he recalls, while some rank-and-file members "were
more open to differing opinions, which I thought was the whole purpose
of the dissident movement."

Christine Maggiore is the director of Alive and Well, the dissident
group that placed the San Francisco ads. She vehemently disputes the
notion that the dissident movement – or at least her branch of it – is
dogmatic and closed-minded. "The ads were not a decree, but rather a
call for consideration of alternative perspectives on HIV and AIDS,"
she told us. "The information was presented as a point of departure for
examination and dialogue."

Maggiore describes herself as having been HIV-positive and healthy
without medication for a decade – much like Current a few years ago.
She says her views are "always open to discussion." But Current's
experiences have not altered her rejection of most HIV science,
including the standard HIV antibody test. "Sean's experience of illness
does not convince me that registering positive on a nonspecific test
for proteins that may be associated with past exposure to a retrovirus
with no cell-killing mechanisms is the reason he now has Kaposi's
sarcoma," she says.

Her group, Maggiore insists, "is about the right to self-determination
in health matters. It's not a belief system that a person adopts as a
matter of faith when they feel well."

But when another former dissident compared the movement to a cult,
Maggiore blasted him with the kind of personal attack Current
criticizes.

In an interview with me for a recent article that appeared online,
North Bay business owner Bill McCormick (who asked to be given a
pseudonym because his straight clients don't know he is HIV-positive)
said he ignored his gradually worsening health until he was
hospitalized with Pneumocystis carinii pneumonia. Even then, he said,
he resisted treatment because of his dissident beliefs.

McCormick said he "was in complete denial, as you are when you're in a
cult," and compared the experience to that of being a Scientologist,
which he was years before. His health, too, has improved dramatically
since he began anti-HIV treatment.

Maggiore responded with a letter blasting McCormick as "an ill and
cranky ex-Scientologist, ... a troubled ex-straight guy who thought he
found salvation in our literature, who desperately sought any scheme or
treatment he believed might undo his positive diagnosis, who suffered
with constant infections brought on by unprotected sex, who ignored his
mounting health problems."

McCormick, who has had a number of hostile responses from the dissident
camp, says simply, "I don't care. I've checked out. Let 'em do what
they want to do. I find it amusing." (See below)

Neither Egan nor Current is willing to go quite as far as McCormick.
Both now consider themselves on the fence as far as the role of HIV in
AIDS, and both say that at times they've seen too much rigidity in both
camps. They also worry about the long-term toxicities of the drugs they
now take.

"There are days when I feel I don't know if all that has happened to me
is related to HIV, and there are days when it's the only thing that
makes sense," Current muses. "I don't have a loyalty to either side.
What I'm doing with standard treatments seems to be working."