AIDS activism commuted death sentences but its spirit is lost

Here's a piece I had over at The Conversation.

For those of us who were around when the HIV pandemic started in the west, How to Survive a Plague, a newly released film about AIDS activism in the US and the fight for more research is an especially difficult, if not distressing documentary to watch. People in this group will recall how friends in their early 20s and 30s died horrible deaths and there was just nothing anyone could do about it.
American AIDS activism taught us a number of important lessons – lessons that go far beyond the treatments we now have for AIDS. These activists, many of whom were HIV positive, knew that they would be consigned to the same terrible deaths that they had watched happen to friends and loved ones go through unless they were able to get their hands on medication to keep the virus that was killing them in check. On the other side were intransigent governments unwilling to fund clinical research aimed at finding a cure, or at least a treatment that would keep HIV under control.
Two successive Republican presidents, Ronald Reagan and George H. W. Bush, really couldn’t have cared less about gay men dying of an infectious disease. As Bush, his that time best mate, Republican Senator Jesse Helms, and the Roman Catholic Church put it, it was just a matter of us changing our “lifestyles” and everything would be hunky dory again.

Death focuses the mind

The film follows the ACT UP movement in New York City, which demanded large-scale and concerted research into AIDS. Its activism in those days fought first and foremost the clinical trials and drug approval system. Trial designs all too often were unconcerned about trial participants’ survival. If your only way to access promising experimental anti-HIV drugs was by participating in a clinical trial, randomised trials that asked you to accept a 50:50 chance of getting a placebo weren’t good enough.
While this might have been a sound research method, try telling someone who is dying that they have a 50% chance of ending up with a sugar pill. AIDS activists didn’t accept this lying down. They were also not prepared to wait for years for AIDS drugs to make their way through the drug approval system, because that bureaucratic course was itself a death sentence. AIDS activists, supported by a growing number of scientists, made themselves highly knowledgeable about scientific matters as well as regulatory issues to make the drug research and development system one that served their survival interests. Knowledge is power.
What’s missing in the film is that this led to interesting alliances. Old school Republican Pat Buchanan, for instance, is shown in an old CNN clip agreeing with ACT UP’s Peter Staley that people with AIDS should be able to access experimental drugs. But what we don’t see in the film is that pharmaceutical companies began bankrolling some of these activist groups because they were also interested in getting their drugs to the market quicker. AIDS made for some fascinating coalitions.
While political AIDS activism undoubtedly changed the system for the better, I’m not sure that much of this is actually replicable when you think about patient activism today. AIDS was unique in that it hit a population that was used to political activism. Gay people in those days were already accustomed to fighting for recognition of our basic civil rights and it was a been-there-done-that type thing for many AIDS activists. Many were also very well educated, fairly young, and had little to lose. Death focuses the mind as they say.

Public spectacle and political act

Any film about AIDS in the 1980s and 1990s will inevitably be about death and dying. And Survive A Plague is harrowing to watch as over the course of the film we watch some of the protagonists wither away and eventually die. Others who actually did survive spoke at the time very matter of factly that they couldn’t imagine surviving AIDS.
Dying became a public spectacle. And it became a political act. The annual events that went into creating the AIDS Quilt were huge. The quilt, which began in 1987 to carry a message of remembrance and hope, now has over 48,000 individual panels that each commemorate a life lost to AIDS and sewn together by friends and loved ones.

Adding to the AIDS Quilt in 1992. Elvert Barnes

Today our deaths have again become private acts. I sometimes wonder whether as societies we can learn something from the way death was celebrated as much as mourned in those communities in the 1980s and 1990s.

A sad indictment

Little is said in the film about survivor guilt among those who made it to the other side. Lives were also destroyed because people were unable to actually make sensible life plans. If you think you’re going to die within a few months or years, a career and pension are not what’s foremost on your mind.
The most tragic thing, to my mind, is that the advent of powerful AIDS drugs that have permitted people to live healthy lives again have basically ended AIDS activism in the west. In some places in the west, HIV infection rates are still high among gay men. But, as is all too briefly flagged in the film, millions die preventable deaths from HIV because they cannot afford access to life-preserving HIV medications in the developing world.
It is a sad indictment of Western AIDS activism that it pretty much ended as a politically powerful movement once its figureheads’ problems at home were solved. There are a few notable exceptions to this, but as a general rule, I’m afraid this is what it is. We are left today with professionalised AIDS bureaucracies that more or less go through the motions. This isn’t radical activism any longer but well-paid senior management types in upmarket office digs.
It would have been nice, in the context of the film, to hear something about the battles for survival that millions of HIV infected people in developing countries face today. South Africa’s former president Thabo Mbeki joined western HIV denialists, people who today still insist that HIV is not the cause of AIDS, with the result that more than 365,000 South Africans are estimated to have died premature deaths during his presidency because of a deliberate act of omission (namely by refusing to provide AIDS drugs through the public health care system).
No doubt, if this had happened during the apartheid years, AIDS activists would have rallied to this cause, but it didn’t cause much excitement among Western AIDS activists. HIV infected Africans struggling to survive the pandemic is a seemingly less important cause than fighting for the same cause in their own backyard.
What the US AIDS activists did was to radically change AIDS from being a death sentence to something that could be managed. For all those thrown sideways by the appearance of a such a terrible illness and who suffered the loss of loved ones, it was no mean feat. But we still need that spirit of activism and that determination to make sure others, however far away, get access to the same drugs we readily have now.