Toronto
7 min

Ignoring the real threat

AIDS groups depend on governments & big drug companies

NOTHING TO LOSE. Louise Binder disclosed her status because she didn't think she'd live long. Credit: Jan Becker

The AIDS epidemic in North America gave birth to one of the most profound social movements ever to emerge around health issues.

As death tolls mounted, AIDS activists – most of them gay men –

challenged the medical, scientific and pharmaceutical establishments and made unprecedented gains.



But most observers agree that AIDS activism is now at a low ebb, even as the virus spreads ever more widely into vulnerable communities and the limitations of current drug treatments are becoming obvious.



Not everyone – gay men, prisoners, the homeless and needle drug users – has equal access to treatment options and appropriate care. And gains made by activists in the past could be in real jeopardy as governments increasingly shift the burden of paying for health care back onto individuals.



But for many AIDS activists, the sense of disaster may have passed. People get mobilized when there is a major crisis, says Tim

McCaskell, a founding member of AIDS Action Now (AAN), one of the earliest and most prominent activist organizations.



“Today, the crisis is not as acute; people are not dropping dead in scads. And thanks to activism in the past, some avenues of participation and communication have opened up that weren’t available in the beginning.”



It’s also true that more and more gay men are turning their attention away from the epidemic and there are fewer recruits to activism.

Call it AIDS fatigue: for those who lived through the worst, the stress of constant deaths has taken its toll. (After all, the vast majority of those who’ve died from AIDS in Canada were gay and about 70 percent of people with HIV in Ontario are gay and bisexual men.)



Some also point to the political climate to explain the relative quiet.



“In the past few years, people have been afraid to speak out because of the turn of this [provincial] government. They are afraid of potential ramifications, of getting less the next time,” says Dr Greg Robinson, an AAN member who also sits on various government advisory bodies.



But current developments point to a need for renewed activism: The epidemic is spreading more widely into marginalized communities and the health care system is being squeezed.



“AIDS shone a light on important issues within health care that affect everyone,” says Louise Binder, activist and chair emeritus of Voices Of Positive Women. “The changes we made were for the benefit of all, the most recent being the Trillium Drug Plan [an Ontario payment plan for people with catastrophic drug costs] and the definition of disability in the provincial legislation… But it seems to me that right now we are stalled. We really need a whole new way of looking at this thing.”



The changing profile of the epidemic has enormous implications for the future of AIDS activism. Injection drug users make up one-third of new infections nation-wide, and the proportion of women, and of people from countries where HIV is endemic (African, the Caribbean) is also up.



When the epidemic exploded in North America in the early 1980s, many gay men came to AIDS activism from gay liberation politics. They were joined by lesbians, many with a social justice background, and influenced by the women’s health movement, with its emphasis on taking power back from the medical establishment.



“Any social movement benefits from prior organizations and activist networks,” notes David Rayside, a University Of Toronto political science professor. AIDS activism benefited from media-savvy members of The Body Politic newsmagazine collective and activists who had “cut their teeth” on the Right To Privacy committee, Rayside says.



He says these prior networks, together with the geographic concentration of gay men in urban areas, which provided social connections, facilitated organizing.



But many of the people who are getting positive test results these days don’t belong to a politically experienced, geographically concentrated or cohesive group.



“Injection drug users, because they’ve been criminalized, can’t even gather together. Native people in cities are typically very disconnected and prisoners certainly have a hard time being activists,” notes McCaskell.



And a central obtacle to organizing remains: HIV and AIDS, because of its links with sex and drugs, is still a highly stigmatized illness.



“There is still a terrible, terrible fear of disclosure among most women. It is still dangerous for them, because of violence in relationships and power and economic imbalances,” says Binder. “These underlying problems are not changing, so I don’t see a whole group of women activists emerging in Canada – except maybe among women drug users and Aboriginal women.



“Activism happens when you are up against the wall, when the advantages outweigh the risks and you don’t have much to lose. I disclosed my status because I didn’t think I would live long.”



The African-Canadian community has “always known activism,” notes Juanita Smith, executive director of Black CAP (Coalition For AIDS Prevention).



“And people are being infected in our community – gay men are being infected, women are becoming infected and so are heterosexual men, even if they’re not being tested.”



But Smith stresses the general tendency of society to discriminate against marginalized communities based on their sexuality. There can be perils in shining a light on a sexually transmitted illness in a marginalized group – the stigma lingers. (AIDS, for example, is still widely known as the “gay disease,” despite all evidence to the contrary.)



There are other challenges to activism.



AIDS service organizations (ASOs), which were born of community activism, are increasingly dependent on government and drug company funding. Like any other institution, the ASOs risk becoming entrenched and self-serving; they also risk responding less to the needs of affected communities and more to the stated or unstated agendas of payers.



The Canadian AIDS Society (CAS), comprised of community-based organizations, “has become an extension of government management,” argues Gary Kinsman, activist and sociology professor at Laurentian University. “I was astounded when the renewal of the [federal government’s] National AIDS Strategy was announced by [then CAS executive director] Russell Armstrong. That, to me, is just an abandonment of independence.”



And Kinsman notes that while the Community Aids Treatment Information Exchange was originally born of AIDS Action Now, it has increasing ties to drug companies.



“We need government and pharmaceutical companies to put the needs of HIV-positive people at the centre. But when AIDS organizations form alliances [with government and drug companies], they lose the autonomy to challenge.”



Meanwhile, individuals who describe themselves as activists are, more and more, operating inside the corridors of power. They sit on government committees, and rub shoulders with drug company representatives.



Here, individuals face the same risks as ASOs – of being co-opted into an agenda which meets the needs of bureaucrats, not the needs of people with HIV and AIDS.



“The role of advocacy [on the inside] is important,” says AAN’s Robinson. “At the same time, some of us are uncomfortable sitting at those tables… the question is, do people who get ensconced inside know when to leave and go outside and start throwing bricks. The people I know are beginning to understand if they’re being tokenized.”



But how tuned in can corridor-of-power activists be to the emerging issues of the disenfranchised and disaffected – to those who are today becoming infected with HIV: young gay men, drug users, natives, street youth, women and those from African and Caribbean countries?



This is a key issue since, according to McCaskell, it is these marginalized groups who will have to provide the spirit of activism.



And “insiders” and “outsiders” depend on each other. Activists on the inside are taken seriously to the extent that those in power “still view us as being capable of causing a ruckus on the outside,” McCaskell says.



But with HIV spreading more widely, activist James Kreppner is worried about the possibility of advocacy and activism becoming fragmented.



“Divided, we are much weaker. No one group can monopolize advocacy, it is a shared value,” says Kreppner, who became infected with HIV as a result of receiving blood products. “Right now, there is a recognition that we have to be inclusive and open and people are trying. But if we’re not careful, if we don’t pay more than lip service, we could end up fragmenting. We have to keep trying to understand each other.”



Kreppner played a key role forging links between the gay community and hemophiliacs, groups which both have high rates of HIV infection but had, initially, little understanding of each other. He argues that even today, constant vigilance is required to keep understanding alive.



“United, we have to ensure none of us are treated like second-class citizens,” Kreppner said. For example, there is mounting pressure for drug users to be supervised by authorities as they take anti-HIV medication. The idea is based on directly observed therapy for people with tuberculosis who, public health officials fear, will not complete the course of treatment on their own. (Prematurely stopping treatment for TB helps to create drug-resistant strains).



“But there are substantial differences between TB and HIV – the former is curable and treatment is time limited,” Kreppner notes.



The tricky balancing act facing activists is finding a way to make common cause among diverse groups and, at the same time, respect individual communities’ own self-determination.



“The most important lesson out of AIDS work is that it must be rooted in community,” says Rick Bebout, activist and former member of The Body Politic collective. “Maybe what we can do is help others figure out how to deal with things in their own communities.”



Smith of Black CAP points out that involved communities must be at the forefront when it comes to advocacy: “Initiatives must be tailor-made and relevant to each community.” For example, her organization has formed alliances to “take AIDS to the pulpit,” since the church has always been a focal point for social justice in black life.



But Smith notes there are also “broader issues that impact all of us, like drug benefits, access to clinical trials and cuts to health care,” that require collective action.



Certainly, activism around treatment issues remains central. “People must have access to treatment. By access, I mean a comfortable local environment that you can interact with, and this will differ depending on the community,” says Robinson.



Activism should also support an individual’s right to make choices about treatment, he says. “That means dealing with a

whole range of cultural and gender issues around treatment. It means supporting Jim Wakeford as he fights to make medicinal marijuana a treatment option. You have to remember, this is not just a virus, this is about public policy.”



Immediate life and death issues used to preoccupy activists, but today they have to think three or four years ahead, Robinson adds.



“We will all die. These drugs will not save us – if we don’t die of AIDS, it looks like we’ll die of liver failure or heart disease (as a result of the drugs). How do we fix that?”



He points to the need to push for post-marketing surveillance, to ensure that the effects of the drugs on real people are documented and addressed. It’s an important issue, but not one likely to bring people out to rallies these days.



Many AIDS activists see the erosion of the overall health care system as a key issue, and point to the need to participate in more general coalitions to fight for the preservation of medicare.



“We do need more general activism around health care and alliances, for example with breast cancer activists,” says Kinsman. “But at the same time, the view that AIDS is a less respectable illness can still be mobilized and so we have to avoid the possibility of a divide and conquer [approach by government]. Certainly, we need to preserve an autonomous AIDS activism.”