Looking Back, Moving Forward: 25 Years of HIV/AIDS in Toronto

On November 29, 2007, ACT hosted "Looking Back, Moving Forward: 25 Years of HIV/AIDS in Toronto," a panel discussion in honour of World AIDS Day that featured Richard Elliott of the Canadian HIV/AIDS Legal Network, Wangari Tharao of Women's Health in Women's Hands, activist Tim McCaskell, and Toronto City Councillor Kyle Rae.

Darien Taylor of the Canadian AIDS Treatment Information Exchange (CATIE) moderated. The text that follows is her opening speech:

Good evening and thank you for joining us here tonight for the AIDS Committee of Toronto’s “Looking Back Moving Forward: 25 Years of HIV/AIDS in Toronto.” It’s a dark and overcast night tonight, but it’s an even darker and more ominous moment in the history of AIDS organizing, with the federal government’s decision to redirect previously announced funding for community based AIDS organizations to the tune of $1 million dollars, a frightening public message to Canadians as World AIDS Day approaches and a punch in the gut to all of you who have worked so hard and suffered so profoundly as you found the strength to personally survive the HIV epidemic and to pull together as a community so that others might survive it.

Sometimes in order to marshal our community resources, it makes sense to take a few steps backwards so that we can take a strong running jump forward, that’s what we hope to do here tonight. By looking back over the past 25 years of AIDS and our incredible, resourceful, moving personal and community responses to it, we can remind ourselves that we have the strength, the courage, the conviction and the abilities to overcome any barriers that might prevent us from moving forward in the fight against AIDS.

So before we move into our panel discussion with four visionary people who together represent over a century of wisdom in forging an effective community based response to AIDS, let me take you back — way back — to the early 1980’s in Toronto.

At this time the first cases of a new disease, characterized by a strange type of pneumonia and a rare skin cancer which caused purplish, bruise like lesions on those whom it affected, were being seen by doctors among their gay clients…doctors in Toronto like Phillip Berger, Stan Read and Donna Keystone who are still practicing today, or doctors like Randy Coates who were to die of the disease.

This new disease originally known as Gay Related Immune Disease or GRID unleashed rampant homophobia and discrimination on the Toronto gay community, which was still reeling from the brutal bath house raids carried out by Toronto police. But the bath house raids had galvanized an incredible community response among Toronto gays and lesbians, as well as their supporter, including the formation of the Rights to Privacy Committee and this response stood the gay community in good stead as AIDS began to take its unrelenting toll.

Although this disease which came to be known as AIDS was being characterized with the full force of homophobia as a “gay plague,” a sort of biblical vengeance for the sins of sodomy, the opportunistic infections which came to characterize it, diseases like toxoplasmosis, cryptosporidium, cytomegalovirus and so on were also being seen in injection drug users and hemophiliacs who had used blood products also in people from Africa and the Caribbean, foreshadowing the racialization of this epidemic.

These opportunistic infections would strike, often unexpectedly, perhaps the only indicator that they were on their way, a sense of fatigue, perhaps a skin or oral yeast infection, because remember that until the mid eighties there was no test to determine whether or not you were infected and indeed there was for some time only best guesses as to what was even causing this disease to spread, how many it would kill and how best to protect oneself. These infections would resolve, often with the use of antibiotics, and some of you will remember the significance of the drug Septra in the days before antiretrovirals or they would kill, sometimes swiftly, sometimes over excruciatingly prolonged periods of hospitalization or home care.

Responding to at worst, public fear and stigma and at best, public indifference, the gay community rose to the challenge of AIDS, creating out of this crisis strong, durable community organizations like The AIDS Committee of Toronto, revolutionizing sexual practices with messages about safe sex, organizing care teams and building hospices to make up for the care that people were not receiving in hospitals, where partners might not be considered “family” and therefore not allowed to stay at the bedsides of their beloved partners or longtime friends as they died and where staff would sometimes enact their homophobia by not caring adequately or compassionately for people dying of AIDS. You know these stories, many of you have lived them in the vivid, precise and heartbreaking detail that no one retelling these times can ever do justice to.

By 1985, HIV testing was available in Toronto, and against calls for the identification, reporting and in some extreme cases, the quarantining of people with HIV, Hassle Free Clinic was providing anonymous HIV testing .However there was no treatment available to slow the progression of HIV, only drugs to treat or prevent opportunistic infections, and the AIDS community was divided about the utility of testing without treatment.

The activist group AIDS Action Now! was formed in Toronto in the late 1980’s to fight for access to HIV treatments which would make HIV a chronic, manageable illness. AIDS Action Now! Would organize drives across the border to Buffalo where people could access pentamidine to prevent pneumocystis pneumonia.In ensuing years, AIDS Action Now! Would gain in force and number as the epidemic continued to grow and the governments of the time continued to twiddle their thumbs. AIDS Action Now! would hold demonstrations at the Parliament Buildings and die-ins at Pride Day, and created briefs and pamphlets which would become blueprints for the first comprehensive response to treating HIV diseases. People with HIV were using a huge pharmacopia of therapies to try to shore up their damaged immune systems: cimetidine, mega doses of vitamin C, naltrexone, ribavirin, peptide-T, kombucha mushrooms, DNCB, macrobiotics, Louise Hay and Bernie Seigal, Chinese herbs prescribed by David Bray, vitamins from Supplements Plus, anything to hold on.

The AIDS community was also beginning to splinter and re-form. From a disease that was associated chiefly with gay men, women with HIV began to emerge on the scene. HIV organizations representing the issues of various ethnocultural and other groups began to form and to receive funding through the AIDS Bureau, the City of Toronto and the federal ACAP program. First ACT, then the Toronto PWA Foundation, then ACAS, Black Cap, ASAAP, Voices of Positive Women, CATIE, PASAN, APPA, Two-Spirited People of The First Nations and so on. But the identity of the person living with HIV, the PHA, as someone who participated, even intervened, in decision making processes which affected our lives was an identity around which we could rally.

Then the early antiretroviral AIDS treatments started to become available. AZT, DDI, DDC, mono therapies that we didn’t then know would create resistance problems later, toxic and vile tasting, they were also drugs that for some of us, provided a tenuous lifeline until the breakthrough in the late 90’s with combination therapies and protease inhibitors.

Let’s draw a curtain across those bad old days, and move west across the country for a moment to Vancouver 1996 where the International AIDS Conference broke the simple strategy propounded by Dr. David Ho:”Hit Early, Hit Hard” with a combination of at least three antiretroviral therapies targeting the HIV viral replication cycle at different points in order to bring it under control.

Instead of watching our CD4 counts or even our CD4:CD8 ratio all eyes were on the results of a new test, the viral load test, which directly measured the amount of virus in the blood. The holy grail (if I may call it that) :an undetectable viral load, achievable only if we never stopped taking handfuls of pills which unfortunately made many of us sick (remember full dose ritonavir?) and tired (remember waking up through the night to take your dose of crixivan?). And that was if you were lucky enough to have the type of ordered day-to-day lifestyle that enabled you to access Trillium, ODSP, or your work place benefits, refrigerate your meds, set your alarm clock, and so forth. If you weren’t in a position to hold yourself and your life together in these complicated ways, well to paraphrase a well known politician speaking what we might now call a very proper AIDS speech “ a marginalized target population with high HIV seroprevalence rate” well, if you couldn’t do that you were going to have a short, miserable life.

So here we sit today, long-term survivors, newly diagnosed, friends, partners, family members, service providers, all of us survivors of an epidemic which has decimated our community. We are living longer, we are coping with side affects one of the most terrible being the enduring marks left on our bodies by this disease and its treatment. I am speaking of lipodystrophy and the way that it continues to mark us out as HIV infected. We have witnessed and we have weathered shifting government policy and public attitudes towards AIDS and indeed we have changed government policies and public attitudes. We may have undetectable viral loads and high CD4 counts or we may be down to our last treatment option, waiting on tenterhooks for new drugs in the pipeline to come to market.

There is a dangerous complacency about AIDS afoot, a sense that it has been cured, that it remains a problem only in the developing world. There is a troubling rise in the criminalization of HIV transmission at the same time as the prevention of HIV transmission shifts from a responsibility we once all shared together, to the responsibility of the person with HIV, a shift back towards the scapegoating of certain groups of people at risk for HIV infection, in particular injection drug users with the backlash against harm reduction. Once again, these are difficult times for people with HIV and those who support them.