SIGN OATH OR GET OUT,
AIDS ACTIVISTS TOLD Activist Group Says Members Must Agree That HIV Causes AIDS

By Colman Jones

Now 10-16 Dec. 1998

There has seldom been a stranger practice in the annals of political activism than the one just instituted by AIDS Action NOW (AAN).

In a moment of supreme insecurity, the plucky organization has decided to require members to sign a "loyalty oath'' affirming their belief that the virus HIV is the cause of AIDS.

How it came to be that the militantly grassroots AAN suddenly demanded orthodoxy from its followers is the story of how dissenters can threaten a group trying to politicize issues of life and death.

At the centre of the storm is AAN's protagonist, Health Education AIDS Liaison (HEAL), whose message and tactics have ignited a vehemence usually reserved for the likes of the religious right.

Says Tim McCaskell, an AAN founder and current co-chair, the oath decision taken by the group's steering committee last month is designed to ensure members would not become mired in a polemic with HEAL. Such a debate, he says, "is really quite peripheral to the real issues around AIDS.''

But the set-to is about much more than HIV. At issue are profound questions of prevention and treatment.

AAN leaders are genuinely fearful that HEAL's hard line against new anti-HIV drug cocktails - the group considers them toxic, ineffective and sometimes deadly - may be steering people away from potentially helpful therapy.

Risky behaviour

Furthermore, AAN members believe HEAL's promotion of the idea that AIDS is not infectious is a dangerous invitation for people to engage in risky sexual behaviour.

HEAL founder Carl Strygg insists the group does not advocate dispensing with condoms, but is in fact drawing attention to a whole range of co-factors - both infectious and non-infectious - that may play a role in AIDS, adding that both prevention and treatment strategies that focus solely on HIV are too narrow.

"What HEAL has done is shine a bright light on something that is very ugly and that is the issue of turf,'' he says. "This is really sad ultimately for patients, because turf and territory have nothing to do with the issue of people dying.''

In watching the most recent events unfold, I can't help but think back to 1989, when I - along with McCaskell and several hundred other AIDS activists - stormed the mainstage of the international AIDS conference in Montreal, where he "officially" opened the conference on behalf of people with AIDS.

I had already been working with the group for over a year, doing research and helping raise support among U.S. doctors for immediate access to the now standard anti-pneumonia drug pentamidine and other experimental treatments at the time.

Part of that work looked at other possible causes of AIDS that may be going unrecognized.

Today that mission has largely fallen to HEAL, a group whose aggressive and scientifically slipshod campaigning has now polarized the debate to such an extent that people can't see the forest for the trees. The victims are subtlety and nuance.

Darien Taylor of the AIDS Committee of Toronto suggests, "their tactics have the effect of forcing other organizations into a kind of fundamentalism, so that in order to oppose HEAL, there's a tendency to say 'HIV causes AIDS, and that's all we're willing to talk about.' I don't think that's actually true - we're quite open to understand the relationship between HIV and other co-factors.''

But to McCaskell, the issue is settled. "I just don't think that there is coherent argument at this point that can, in any kind of realistic way, claim that HIV doesn't exist or that it doesn't cause AIDS.''

Pretty complex

Roger Spalding, who served on AAN's steering committee from the group's inception until 1991, says, "I would never want to sign something where I had to commit myself to believing that HIV was the sole cause of AIDS, because it's a pretty complex question.''

His feeling is shared by Mark Freamo, who's worked with AAN since 1990, serving as co-chair for two years.

"I felt uncomfortable with it,'' he says. "Before dismissing (alternative views), I would like to know what the basis of it is, you know, why take this complete line-in-the-sand position on HIV?''

McCaskell didn't always hold the same steadfast position on this issue. When I interviewed him for a television documentary back in 1990, he said, "The criticism of HIV theory is important in terms of people's treatment strategies - in terms of not keeping all your eggs in one basket. We're all in a gamble, and I prefer to hedge my bets.''

Even as recently as this past August, Greg Robinson, co-chair of AAN, told me that critical reevaluation of AIDS science is urgently needed. "I think we'll see more community-based organizations taking up some of the questions that need to be answered to get us to the multiple reasons people might become ill who have HIV.''

The steering committee's unilateral decision is raising concerns among other activists.

Raymond Helkio, of the People with AIDS Foundation, says his agency would never turn away anyone living with AIDS, regardless of their beliefs.

"We're not going to take a position - for us, it just doesn't make sense. We're still going to look after those who are infected.''

Rick Bebout, involved in AIDS work since the early 1980s, also has misgivings. "I've never liked the idea of loyalty oaths. I just don't think that, in a broad community, that's how you keep discussions going.''

Bebout sees HIV as a requirement for developing AIDS, but doesn't believe the virus is necessarily sufficient to do the job alone, an increasingly prevalent view shared even by the two discoverers of HIV.

Robert Gallo, who first announced that HIV causes AIDS, has backtracked several times.

When I talked to the U.S. researcher again last year, he admitted other factors could be just as important as HIV - or even more important - in destroying the immune system.

Similarly, French scientist Luc Montagnier, president of the World Foundation for AIDS Research and Prevention, reached this week in Flushing, New York, says he is still interested in the question of whether some biological infectious co-factors influence the development of AIDS.

"I'm not giving up the possibility that there might be some co-factor,'' he tells me.

Among the handful of investigators seeking support for co-factor research are Toronto's own John Scythes, who also owns Toronto's Glad Day Bookshop and worked with AAN in its early days, driving down to Buffalo to smuggle supplies of pentamidine.

Oath resented

But now that AAN has decided to exclude dissenting voices from its midst, Scythes won't be renewing his membership. He says AAN's loyalty oath is just plain "silly.''

Scythes, who has collaborated with doctors at Toronto Hospital and the province's laboratory services branch, resents efforts to sweep away serious scientific concerns over AIDS causality - concerns he has lectured on at major universities and hospitals.

"I've published tons and spent $100,000 of my own money and I won't sign the oath.''

But to another original member of AAN (who wishes to remain anonymous), the decision is no surprise.

"It looks to me like a classic example of the Stockholm syndrome,'' he suggests. "Most of the people in AAN have had their lives and their souls held hostage for so long by HIV - and the enormous medical-media complex surrounding it - it's no wonder they've begun to identify with the enemy.'' *