The HIV disbelievers

To many, it seems improbable. Thoroughly wild. Heresy even. But 20 years after the first gay men died from the condition we now know as AIDS, a growing chorus of people have banded together to question the very basis of the epidemic itself.

Such groups as ACT-UP/San Francisco, H.E.A.L., Alive and Well AIDS Alternatives, the rock group the Foo Fighters and South African President Thabo Mbeke have all come to the same conclusion: There is no scientific evidence that proves HIV equals AIDS.

Many of these same groups, most vocally ACT-UP/SF, have challenged HIV-positive people to throw away their drug therapies (or to not begin taking them at all) and openly flout conventional wisdom that says condom use is the only responsible sexual practice to stem the rate of infection, besides abstinence.

Call them the disbelievers.

“I think the majority of people are sick of AIDS,” says David Pasquarelli, spokesman for ACT-UP/SF. “They’ve tuned out. They’re tired of the terror, tired of the stigmatization and instinctively know that sex cannot lead to death. Sex without condoms cannot equal death.”

Strong words from a group that, in the early years of the disease, led the fight to force the federal government to recognize the crisis, agitated for clinical and research dollars as well as fast-track approval for new drug therapies.

“At that time, there was a lot of hysteria, a lot of fear around AIDS, and there wasn’t a rational climate to look at this disease objectively,” Pasquarelli says. “Now, we say our goal back then—getting experimental drugs into bodies—was a tragic mistake.”

Today, Pasquarelli’s group spends its time promoting the theory that AIDS itself—more specifically, its supposed cause, HIV—is a “medical mistake.” ACT-UP/SF has distributed fliers and leaflets throughout the Bay Area, charging that “AIDS is a Lie” and that “AIDS Drugs are Poison.” Other fliers are even more caustic, saying, “Fire the Liars; Open the Baths"—strongly implying that if HIV isn’t a threat, then now-accepted unsafe sex practices should be repealed.

Pasquarelli and others maintain that doctors and scientists who continue to buy into and promote the traditional AIDS paradigm have been corrupted by the pharmaceutical industry, their careers and reputations based on a medical mistake.

“AIDS is the medical scam of the millennium,” he adds. “Hundreds of thousands of people were poisoned to death. The entire American population was terrorized by anti-sex propaganda, and billions of taxpayer dollars were squandered. AIDS is a medical mistake mixed with societal homophobia.”

While these questions about the AIDS paradigm have been in the background in some form or another since the late 1980s, it’s worth noting that the message has grown louder in recent months.

It was vocal enough to gain national media attention, most notably in the Aug. 28 issue of Newsweek. And strong enough to gain Christine Maggiore, founder of Alive and Well AIDS Alternatives, an audience with South Africa’s Mbeke during the recent World AIDS Conference in that country. And vocal enough to cause some 5,000 doctors and scientists attending that conference to issue a joint letter condemning the dissident views being proffered by Maggiore and others.

Science questioned
While the argument has heated up recently, its history goes back to the discovery of HIV itself. The disbelievers start their argument this way: Going back to Dr. Robert Gallo, the National Cancer Institute’s retrovirologist who claimed in April 1984 to have isolated the virus—then known as HTLV-III—that causes AIDS. These “AIDS dissidents” maintain that Gallo’s discovery was not subject to peer review (meaning it had yet to be published in medical journals at the time of the announcement). Maggiore and others also claim that since Gallo was the same scientist who claimed, in the mid-1970s, to have isolated a virus that causes cancer—a theory that brought jeers from his peers for a time—his connection to the discovery of HIV is suspect.

Not addressed, however, is the fact that Dr. Luc Montagnier, a retrovirologist with the Pasteur Institute in France, arrived at the same conclusion at virtually the same time and was later credited as a co-discoverer of HIV.

The dissidents go further, claiming—in printed materials, in meetings with local civic and government leaders and in the media—the fallibility of the HIV test itself, noting that some people have received both false-negative and false-positive readings.

ACT-UP/SF also maintains that if HIV were a “true epidemic,” the number of people who are said to have died from this disease would have skyrocketed, not dropped, in the United States over the last decade.

Pasquarelli also asserts that if AIDS were a “truly contagious” disease, it wouldn’t have stayed confined within certain risk groups, such as gay men and injection drug users. In other words, if AIDS were truly caused by a virus, it would have infected men, women and children across the board, regardless of sexual orientation or social behaviors.

Some 400,000 people nationwide have died from AIDS-related complications—about half as many as were projected to die when numbers came out in the early 1990s. Yet, Dr. Peter Piot, head of the joint United Nations HIV/AIDS Program reports that two-thirds of the estimated 33 million HIV-infected people worldwide live in sub-Saharan Africa. In the United States, the Centers for Disease Control estimates that some 700,000 people have HIV/AIDS. Because the federal government requires states to report only recorded numbers of AIDS cases, HIV estimates are just that—estimates. This will change in California, however, come Jan. 1, 2001, when the state will require reporting for both HIV infection and AIDS. These figures, many contend, undercut the very basis of the disbelievers’ claims.

Additionally, the CDC reports that HIV infection among American women has increased significantly during the last decade, especially in communities of color. It estimates that between 120,000 and 160,000 adult and adolescent females are living with HIV infection or AIDS. While the number of people living with AIDS in the United States increased in all groups between 1992 and 1997 because of an expanded AIDS case definition and an improved survival rate among those who have benefited from the new drug therapies, the number of infected women has more than tripled, from 7 percent in 1985 to 23 percent in 1998.

Dr. Scott Christensen, an oncologist with the UC Davis Medical center, rejects the disbelievers’ claims, asserting that the spread of the disease in the United States has slowed, and that the number of deaths has not reached 1 million is a direct measure of the success of public health interventions.

Christensen further notes that while epidemics are usually limited to a population group or location, HIV is actually a pandemic in that it affects people worldwide, regardless of location, culture, ethnicity or sexual orientation.

The disbelievers’ logic, Christensen asserts, “is bullshit.”

Despite having the bulk of the medical and scientific community against them, Pasquarelli and others are fervent in their contention that if HIV doesn’t cause AIDS, as they believe, then everything that has come afterwards—HIV testing, drug therapies to treat the virus and disease prevention strategies—has been based on a lie.

Pasquarelli goes a step further: “AIDS, statistically, isn’t a real risk to heterosexuals … non-drug using heterosexuals have a greater chance of being struck by lightning than [they do] of contracting AIDS.”

Alive and questioning
Steven Keller understands most people’s astonishment or outright hostility toward the suggestion that HIV doesn’t cause AIDS. It was only four years ago when he began questioning conventional AIDS wisdom. Testing HIV-positive in 1993, Keller’s T-4 lymphocyte cells (T-cells) dipped below 200—the defining criterion for an AIDS diagnosis—in 1995.

He tried AZT for about a week in 1996 but had severe reactions to the drug. Shortly thereafter, he went on protease inhibitors—a cocktail of drug therapies that had been recently approved. His drug regimen, like that of many gay men, was intense and read like an alphabet soup—D4T, 3CT and Viracept, to name just a few. And, initially, the drugs seemed to work: His T-cells increased to a high of 300, and his viral load—the measure of how much of the virus is in a person’s system—decreased significantly.

But after about a year, his T-cells dipped to 50, and his viral load increased to about 180,000. A different regimen was tried. But side effects from a chemotherapy drug called Hydroxyurea, which kills white blood cells in the bone marrow, caused extreme joint pain and pain in the soles of his feet—so much pain that Keller at times couldn’t stand or walk.

Keller’s experience with protease inhibitors isn’t uncommon. The drugs work by halting the replication of the virus within the cells. Even people who credit the drugs with extending their lives report side effects ranging from kidney stones to liver problems, as well as fatigue, diarrhea, anxiety and insomnia.

“At that time, the theory was, ‘Hit early, hit hard,’ “ says Keller, speaking from his San Francisco home. “Meaning … you didn’t have to have any AIDS defining illnesses. … It just mattered that your T-cell count was below 200 and your viral load was [high]. So you took the drugs … no matter how you were feeling.”

In some cases, side effects have been so pronounced as to cause the same wasting condition associated with the disease itself. This is evidence, to Keller and others, that the “Hit early, hit hard” practice is negligent.

“It’s because of this theory that we’re seeing a lot of guys walking around the Castro looking like skeletons,” Keller says.

Seeing men in that condition and experiencing negative side effects himself, Keller stopped taking all of the drugs in 1998. Since that time, he says he has remained asymptomatic—even though his T-cell count is around 160 and his viral load is about 300,000.

Keller insists that, despite his AIDS diagnosis, he doesn’t have AIDS. His conclusion is based, he says, on the fact that he has no “AIDS-defining” illnesses, such Kaposi’s Sarcoma and Pneumocystis, two of the more common illnesses seen in AIDS patients that have led to death.

“At this moment, I don’t believe that HIV has any negative effect on my life,” Keller says during a recent interview.

In the past, however, Keller did experience night sweats, diarrhea and insomnia—all common symptoms accompanying an AIDS diagnosis.

“But that’s because I was under a lot of stress because I had bought into this ‘death sentence’ lock, stock and barrel,” Keller says. “I was told I had AIDS, and as a gay man, I didn’t know if I was going to live to see tomorrow. I was stressed, sad, depressed and angry. It was horrible.”

The disbelievers contend that the establishment’s willingness to rush AIDS therapies to market before they were fully tested resulted in people needlessly dying and countless others becoming horribly disfigured from the very drugs prescribed to save their lives.

“You have to remember that in the beginning, gay men were given AZT at somewhere between [500] and 1,500 milligrams per dose, five times per day,” Keller says. “This stuff was poison; it says so on the label. Scientists had studied this as a chemotherapy drug for cancer patients but scrapped it 30 years ago because it was causing deformities in newborn mice—and from much smaller doses. But we were so desperate to live, we’d try anything in those days.”

The labels on bottles of AZT do, in fact, bear a skull-and-crossbones graphic and a warning about the medication’s poisonous content.

Believers and disbelievers agree that AZT was given at too high of a dosage and could have hastened many people’s deaths in the early days.

Kevin Johnson, a longtime AIDS activist and former El Dorado County resident who was diagnosed with full-blown AIDS in 1989, says that while he believes AZT hastened the death of many gay men who took it early on, he doesn’t agree that this one fact is sufficient to support the rest of the anti-HIV theory.

“Here’s the truth,” Johnson says. “To the best of my reading, not one person who has died of AIDS has been found not to have HIV.”

Keller disagrees, but says his refusal to take AIDS drugs—specifically protease inhibitors, since AZT is rarely given alone anymore—isn’t meant as a sweeping fiat for everyone.

The people who are on protease inhibitors, Keller says, “believe these drugs are saving their lives, so I don’t want to be insulting. I really feel for these guys. But I’m convinced the drugs are doing more harm than good.”

Beliefs and disbeliefs
Speaking from her home in the Los Angeles suburb of Studio City, Christine Maggiore sounds more like an impassioned neighbor than a spokesperson for a group leading the charge against the “AIDS industry.”

The founder of Alive and Well AIDS Alternatives is thoughtful, can rattle off scientific processes, therapies and statistics without notes and, frankly, doesn’t sound like a radical.

And she doesn’t consider herself to be one, either.

“We’re not putting forth a theory,” Maggiore says of Alive and Well, an organization whose board is made up almost entirely of HIV-positive gay men. “We want informed consent. We promote awareness.

“When you have so many unanswered questions that tend to be … glossed over, disregarded or explained through convoluted, complicated [reasoning], things that don’t add up, you start to wonder, ‘Is this just one big huge mistake, and, in a certain sense, have we justified that mistake all these years?’ “

Like other disbelievers, Maggiore was once herself a believer in the traditional AIDS model. Active in AIDS Project, Los Angeles, the L.A. Shanti Project and a founding member of that area’s Women at Risk organization from 1992 to 1995, Maggiore said her transition began after seeing people around her follow “doctor’s orders” and go on the various drug therapies.

“Every single woman on [the Women at Risk board] was taking medications. And they’ve all died,” she says.

And the gay men who didn’t “conform,” who didn’t take the AIDS drugs and died anyway?

“They found themselves in profound isolation [by] deciding not to participate in the collective consciousness of AIDS and lived very much outside of things. So they most likely succumbed to the depression that went along with being sick and being in isolation,” she says, adding that others whose immune systems were already compromised could easily have died because of untreated health problems associated with years of recreational drug use and/or addiction.

Maggiore also feels certain that scientists never isolated HIV and that the viral load test itself is flawed, in part, because no one has ever performed the test on both HIV-negative and HIV-positive people. She maintains that labs will admit that HIV-negative people can get a positive reading and doesn’t see that as much of an endorsement of the test’s veracity.

Maggiore says that in 1992, she had a viral load of 360,000, has never taken any AIDS medications and that she’s “fine.”

She also bristles somewhat when reporters ask her to describe her beliefs.

“A belief falls into the realm of religion, where you accept something on faith,” Maggiore says. “My position … is not faith-based. I’m of the belief that if something doesn’t make sense, you have the right to question that.

“I say I don’t see, thus far, enough properly prepared, correctly presented, scientific evidence that indicates that testing HIV-positive means that I have to live as if I’m dying or that I have to medicate.”

But Alive and Well, Maggiore insists, does not advocate abandoning safe-sex practices, nor does the group push the idea that HIV-positive people should suspend all drug therapies.

“We’re not authoritarian. We’re not into ‘shoulds,’ “ Maggiore says. “I’ve never said ‘Throw away your condoms.’ I wouldn’t put myself in that role.”

What she’s done, instead, she says, is create an organization in which people can tap into alternative information not represented in the “narrow view presented in the HIV establishment … and government.”

Like other disbelievers, Maggiore says it frustrates her when the medical establishment pins every ache and pain, no matter how small, on a person’s HIV-positive status.

“HIV diagnoses blind doctors to any other illnesses that could [cause] symptoms,” she says. “One guy I know of kept coming in and complaining of headaches, and the doctor said, ‘Of course … you have HIV.’ Well, it turns out he had a brain aneurysm. With HIV … the individual has been lost.”

In an attempt to turn the tide, Alive and Well is conducting a clinical study taking 22 HIV-positive people who don’t want to go on conventional therapies and directing them toward doctors who will “look beyond their HIV diagnosis,” deep into their health history to determine “what is really causing these health problems, instead of just assuming they’re HIV-related,” Maggiore says.

She and others claim it’s time to open up 20 years of “single-minded” focus to new voices, and they want a seat at the table, saying that disbelievers have a contribution to make.

“The problem called AIDS obviously exists,” Maggiore says. “We’re asking ‘Is that the best way to describe what’s happened … and do the words associated with this undermine our ability to understand and resolve this tragedy called AIDS?’ “

Accepted truth
Gary Myerscough shakes his head in frustration as he listens to a reporter tick off a list of concerns and claims made by disbelievers. The 54-year-old Vietnam veteran and former field director for the Republican National Committee doesn’t hesitate in his response.

“I don’t believe [HIV causes AIDS], I know it,” he says. “I need to be adamant about that. The data is empirical and has been studied around the world. HIV causes AIDS.”

Myerscough, who lives in Sacramento with his partner of nine years, was diagnosed with full-blown AIDS in 1992. At the time, his T-cells were well below 200, and he had Kaposi’s Sarcoma lesions on his legs. He says denial kept him from getting tested previously, although he had begun safe sex practices as early as 1979. His partner, Will, is HIV-negative.

“I also had the night sweats … but, it couldn’t be me,” he says of his thinking then.

But in 1981, before a name was even put to the illness, Myerscough says the Bay Area Reporter—a gay weekly in San Francisco—was publishing two to three pages of obituaries per week.

“Gay men were dropping like flies,” he says, remembering the early days of the disease. “You’d go in with a cold … and you’d be dead in six months to a year, if it took that long, because you were going in with a very advanced stage.”

Unlike the disbelievers, Myerscough fully credits protease inhibitors with staving off death and raising the quality of his life.

Between 1992 and 1996, however, the 5-foot, 11-inch-tall Myerscough went from 205 pounds to 160 pounds and was told he had the wasting syndrome that often accompanies an AIDS diagnosis.

“I started making the rounds, saying good-bye to people, putting my affairs in order,” he says. “I was sliding. My T-cells were down to 35. Then I found out I had developed [adult-onset] diabetes.”

Within three months of taking the first round of protease inhibitors, Myerscough’s weight began to return (he now weighs about 180 pounds), and his T-cells shot up to 382, where they remain today. His viral load became undetectable for about three years, although it is now at about 12,000.

While agreeing with critics that AZT “probably hastened and certainly didn’t prevent people dying in the early years,” Myerscough notes that “it was the only thing available, and people were willingly taking it because they were desperate. People take chemotherapy today, and it doesn’t always halt cancer; people get operations, and they don’t survive. [Treatment] is a gamble with almost any disease.”

And Myerscough goes a step further, freely admitting that people with AIDS who take protease inhibitors are “guinea pigs” who “don’t really know what the long-term effects of these drugs will be.” But he vehemently disagrees with critics who say that is reason enough to reject drug therapies.

“Without [the drugs],” Myerscough says simply, “I would not be sitting here talking with you today.”

Although on permanent disability leave since his diagnosis in 1992, Myerscough says he’s been luckier than some in that there are hours during the day when his energy level enables him to still participate in AIDS education, prevention and planning activities. As a Sacramento AIDS Foundation board member since 1991, Myerscough is now active in the organization’s “Oasis” project, which provides a coordinated and collaborative continuum of care including transitional housing for women with AIDS and their children. He also serves on the HIV Health Service Planning Council, which oversees the distribution of federal Ryan White Act monies to Sacramento County and the Health and Human Service Coordinating Council, which assists service delivery agencies in identifying and responding to the human-services needs of county residents.

Myerscough says it’s difficult for him to fathom the disbelievers’ arguments against the virus itself and its transmission.

“We know perfectly healthy people—[men] who didn’t use drugs, didn’t use poppers, [go]-to-the-gym-type healthy—who now have HIV. That proves to me that even if some people’s immune systems were already compromised, the method of transmission is what [holds up].

“If I infect my partner with HIV, to me, I’ve done a morally wrong thing. I’ve just given [him] a disease that can kill [him]. Do they forget how many gay men have died? We know that transmission is either through infected [blood or semen]. I can’t believe they don’t believe that. It just doesn’t make sense.”

Finally, Myerscough fears that younger generations will get the wrong message if groups like ACT-UP/SF become more vocal.

“It’s fine if you want to reject the drug therapies for yourself,” he says. “But I wonder, if you’re really saying you don’t believe that HIV causes AIDS, and you don’t believe you’re sick, then why are you meddling in other people’s lives by putting forth this theory?”

Absolutely incorrect
Having worked as an AIDS oncologist for eight years and having served as president of the Sacramento AIDS Foundation since 1994, Dr. Scott Christensen comes up with more than a few contradictions when reviewing the disbelievers’ contentions.

To their argument that treatment hasn’t always been effective and therefore bolsters the theory that HIV isn’t the cause of AIDS, he points to the fact that STDs such as syphilis and gonorrhea “have been with us for 2,000 years, and we haven’t eradicated that.”

“And we haven’t cured diabetes. But to take a heretofore unknown disease and develop effective treatments in 20 years’ time is unheard of before in modern medicine. Has it been perfect? Of course not.”

Secondly, Christensen says, “Taxpayers’ dollars have not been squandered. To … transform an acute terminal disease to a chronic disease in 20 years is amazing. Their comments are very much like those we heard in the 1940s and ‘50s about cancer.”

As to the questions of peer review and the legitimacy of the HIV test, developed by Gallo, Christensen says the disbelievers are wrong on both counts, starting with the fact that both Gallo and Montagnier published their findings in Science and the New England Journal of Medicine—both peer review journals of great import.

“But I actually find that to be a minor point,” Christensen insists, maintaining that with a disease of this magnitude, “if they were wrong, then all of the other subsequent work, such as the HIV test, would have been wrong. It’s one of the fundamentals that have to be in place for everything else to work. There’s no gray area here.”

Christensen also rejects the notion that the HIV test and viral load test are unreliable and have been used incorrectly.

“Absolutely incorrect,” Christensen says, bluntly.

As to the charge that doctors such as Christensen wouldn’t dare challenge the AIDS orthodoxy because they have staked their career on the disease, he says, “Despite their protests to the contrary, that sounds like a conspiracy theory to me. Besides, there’s actually a monetary incentive for scientists and drug companies—anyone—who comes up with a cure, with a vaccine.”

And he’s more than frustrated by the suggestion that HIV has never been proven.

“You take an HIV-positive patient and give them a clear method of distribution to an HIV-negative person, and that person will become infected. You’ve proven the theory [in that way] alone,” he says.

If the number of full-blown AIDS cases have dropped in the United States, yet risen in places such as South Africa and Indochina, Christensen contends, it doesn’t make sense that HIV doesn’t cause the disease. Additionally, when more states begin reporting HIV numbers, Christensen says, a truer picture will emerge.

He also notes that all the major health authorities in San Francisco, including UC San Francisco and the San Francisco AIDS Foundation, sent out a letter a few months ago, denouncing the tactics of ACT-UP/SF, adding that many of the organization’s tactics have been “particularly offensive"—something ACT-UP members themselves admit with some pride.

Does the possibility of the disbelievers gaining a stronger foothold in the national debate give Christensen pause?

“It’s doesn’t scare me," he says. "It’s symptomatic of a frustration that we don’t have a cure. Also, AIDS is no longer sexy—it rarely makes the front page any longer. So this is possibly a way for them to draw attention to themselves, to their wants and desires. But I won’t guess what their motivation is; I don’t know."