The non-believers

By Kelly Rude
Xtra! Aug 26 1999

Why do a bunch of healthy-livers irritate other AIDS activists so much?

The world is flat, right? HIV causes AIDS, right?

Wrong, if you happen to align your thinking with the politic of an international organization called HEAL (Health, Education, AIDS Liaison).

Not only does this group of dissident voices suggest that HIV doesn’t cause AIDS, they also claim that the virus has never been isolated. So the group, which has been around since the early 1980s, is raising doubts about the validity of both the HIV antibody and viral load tests.

They’ve been accused of advocating against testing and treatment of people with HIV. They claim they’re just asking questions.

The “world is flat” metaphor is apt. HEAL is offering radical advice in the face of what AIDS organizations, drug companies and other gay activist groups have been saying.

Activism, sometimes quite militant, has been our strategy. HEAL should fit right in. But in the history of gay activism, militance within the ranks is dealt with very differently. Dissenting voices like HEAL are looked upon with derision by mainstream AIDS service organizations (ASOs).

Though the mainstream ASOs say dissenters should not be taken seriously, they have made serious efforts themselves to respond to HEAL’s ideas, and in some cases, to silence them.

Who’s right? Public debate might help.

But the mainstream does not want to go there. Robert Trow of Toronto’s Hassle Free Clinic has been public in his admonishment of the HEAL thesis about false positive test results. Yet he suggests that “the possibility of such a meeting would be like a public debate between gays and the religious right:

“I can’t imagine it happening.”

This year, a pamphlet authored by Trow, was to be printed as a rebutal. But Tim McCaskell of AIDS Action Now, the lobby group that advocates for access to treatment, says members may change their minds.

“We might not publish it now as it will draw more attention to HEAL, and the least attention this group gets the better.”

HEAL Toronto has been barred from the 519 Church Street Community Centre, but the Anarchist Free Space group has recently offered HEAL the use of their space in Kensington Market. Sexual politics are now mainstream; social politics are now the fringe.

At the heart of the HEAL debate is the concept of informed decision making. A person armed with facts makes educated guesses about his condition and his treatment. But the facts are relative and constantly changing, so the guessing is complex.

McCaskell and Trow — and many others including HIV specialists and primary health care providers — are concerned that the HEAL message is dangerous because it will result in people choosing not to be tested and therefore not getting treatment until it’s too late.

Though the core beliefs of HEAL seem hard to swallow after all we’ve heard about AIDS, there have been several scientists in the group’s camp. Researchers on side include Dr Peter Duesberg and Dr Kary Mullis, the Nobel prize chemist. Mullis argues that, as well as HIV, some 20 other compounds were found in the sample taken from the patient used by Dr Robert Gallo to link the virus to AIDS.

The administration of US President Ronald Reagan, under growing pressure by gay activist groups to respond to the crisis, made a unilateral statement that the cause of AIDS was HIV.

Gallo and his associates marketed a test to screen for HIV antibodies. AZT, originally designed and then scrapped as a cancer treatment in the ’60s, was chosen as the first front line treatment.

But people undergoing treatment were getting sick. And dying at an alarming rate. Key players in the HEAL organization began to hypothesize that AZT caused AIDS.

A dramatic statement, indeed. But from AZT to combination therapy to viral load testing to protease inhibitors and now non-nucleoside additions to the cocktail, the premise has been to hit hard and hit fast. Eradication of the virus at all costs.

Attitudes toward harsh treatment methods, though, have been catching up to HEAL thinking. There is now increasing skepticism about hitting so hard so fast if there is no indication that the patient’s general health is deteriorating. Lawsuits are beginning to be filed against physicians who downplayed the side effects of certain drugs which may have caused irreparable damage.

The physical side effects of anti viral therapy is one thing. The psychosomatic effects of a diagnosis is another. HEAL refers to people as being “HIV labeled,” and points fingers at hysteria mongering for the good of public health. They argue that early AIDS diagnoses are early death sentences, with people buying into the AIDS = DEATH axiom.

Many HEAL volunteers (all members are called volunteers) are long term survivors. Some are even non progressors — men and women who were tested as HIV positive 10 years ago and are still healthy without the assistance of drugs.

These individuals are perceived as anomalies, but as time passes, their numbers are growing. And some credit their health status to holistic solutions like meditation and homeopathic medicine. Through their own personal experience, they don’t feel like they fit into the largely accepted theory of AIDS.

They argue that we need to learn how to keep the immune system in good shape. Rest, exercise, better nutrition, more hydration, less stress. We’ve heard it all before. But we’re not responding. We’d rather take a pill or 10, get a little stronger, and then party on.

Theories about sex, drugs and rock and roll are far too bitter. The gay community holds some important keys to the discovery of a cure, but we’re not holding an accurate mirror up to ourselves.

HIV as the single cause of AIDS is a politically safe paradigm to accept. Lobbying for treatment and showing compassion for the dying is all that is required. Accepting the HEAL premise and questioning things to this degree is a huge paradigm shift.

Not all the mainstream has reacted with such hostility to HEAL’s message. Dereck Thaczuk, treatment counselor at the Toronto People With AIDS Foundation, offers that “although I disagree with much of the HEAL hypothesis, I am happy that questions are being raised.”

When asked if he would steer people to the HEAL website (www.healtoronto.com), his answer is that he wouldn’t steer them away as he concedes HEAL Toronto’s co-founders Robert Johnston and Carl Strygg “are far more knowledgeable than their opponents in mainstream ASOs.”

As activist and lobbyist, Johnston has met resistance. When distributing a press release and questioning the panelists at a Geneva conference debriefing in Toronto, his questions were curtailed as disruptive by the panel’s moderator, AIDS Action Now’s Maggie Atkinson.

Johnston’s issue currently is not so much with the large mainstream ASOs.

“They all have an interest, professional and financial, in the paradigm that HIV causes AIDS,” he says. His desire now is for a forum to publicly confront the administration of the Ontario’s Ministry of Health HIV testing labs to debate the rationale for public health policies.

These kinds of activities are aimed at starting dialogue. Whether that dialogue is welcome or not is another issue.

In the context of AIDS activism, HEAL’s message has always been seen as fringe. But HEAL’s tactic is part of the coming of age of AIDS activism. Right or wrong.