I am putting the finishing touches on a new book manuscript on social movements and market transformations with my co-author Ethan Kapstein. In the process of researching that book which focuses on the global AIDS treatment advocacy movement, we tried to get our hands on any relevant material. We became aware of two important documentaries that have just been released, one is David France’s How to Survive a Plague which captures ACT UP’s mobilization for AIDS treatment in the United States in the 1980s and 1990s. The other is Dylan Mohan Gray’s Fire in the Blood, which covers the global movement for AIDS treatment access of the early 2000s. I had an opportunity to screen both films, and here is my review of How to Survive a Plague.
At the time, the gay community, one of those most affected by this disease, was deeply stigmatized and faced widespread discrimination. Partners of those living with and dying of HIV and AIDS lacked visitation rights at hospitals and often were kicked out of housing if their lover died. Until the realization in the mid 1980s that AZT, a drug once meant to fight cancer, could slow the progress of the disease, HIV was a death sentence accompanied by a variety of horrific opportunistic infections as the disease moved inexorably forward to its bitter end, with lesions and cancers that would gradually rob the body of its mass and vigor as those afflicted with it wasted away to skeletal figures.
How to Survive a Plague vividly captures a period in American history just long enough ago that people in their early forties and younger might not have an appreciation for what it was like for a community to face both systemic discrimination and a devastating disease. I was struck by how self-aware the community of activists who fought the AIDS crisis were in documenting their struggle through video. Many if not all actions were accompanied by videographers, whether it be Catholic church services where activists disrupted Mass or the wrapping of Senator Jesse Helms’ Washington house with a gigantic condom.
The director David France’s achievement is to make that material, collected over the past two decades, accessible to an audience too young or unaware to have known the scene. For those who lived through it and know the players or the wider arc of the disease, the film surely has a different poignant resonance as they look back on lost loves and their own past (Andrew Sullivan’s remembrance is one of my favorites).
Beyond the archive material of public protest, there are private moments and footage of a number of key figures in ACT UP like Peter Staley, Marc Harrington, Ray Navarro, David Barr, Jim Eigo, Bob Rafsky, Ann Northrop, many of whom have gone on to do other things and others who are now dead. For those who do not know at the outset who is still alive today, the film purposefully builds a dramatic narrative, holding back contemporary interviews with a number of players in the back half of the film, revealing their disparate fates. That reveal is cathartic both for the viewer and those interviewed.
When we first see these men and women, the architects of ACT UP, most of them are in their twenties and thirties with the flush of youthful good looks and energy about them. By the time we arrive at the end of the film, we have witnessed in some cases footage of the physical and psychological toll the disease has taken. Or we see the activists now middle aged, craggy with the enormity of what they experienced visible in their demeanor. In those interviews, the activists have a chance to look back on their past, and the weight of memory is profound for them and us as audience.
ACT UP by the early to mid 1990s began to come apart amidst internal conflict over its direction. The film does not shy away from this moment and shows some of the footage of meetings in which these tensions are manifest. Larry Kramer, the playwright and ACT UP founder, witnessing this conflict is aghast and shouts down the back and forth in a meeting, “We are in the middle of a fucking plague.” “Until we get our act together we are as good as dead.”
The nature of the disputes that rent ACT UP have much to do with the mainstreaming and taming of the movement as it grappled with a system initially deemed hostile to it but ultimately one that could gradually accommodate them. The Centers for Disease Control (CDC), the National Institutes of Health (NIH), and to some extent drug companies like Merck became more willing partners to move the scientific process of drug discovery and testing along to get therapies available faster as ACT UP demanded.
This increasing coziness of some in the movement, especially the T&D Committee (or Treatment and Data), to government and business ultimately became a strong enough rift for some of them to break off and form their own organization, the Treatment Action Group (TAG). Other divisions, that perhaps get less coverage here than they have in academic circles, is the fault line between those HIV positive, many of them white gay men, and allies, some of them lesbians, who tried to bring attention to wider sets of social issues facing the community of those living with HIV. For those living with HIV, the emphasis was largely on getting drugs into bodies. For others, issues like discrimination, both gender and racial, demanded more attention.
The film, with its focus on those who sought an accommodation with CDC and NIH, perhaps implicitly sides with that group and they are an incredibly sympathetic bunch. That said, there are important stories to be told about how advocacy for women also brought attention to how both the science and the movement focused on the needs of men, until women helped bring attention to a variety of symptoms and ailments that were AIDS-related but were not initially classified as such.
I was struck by the change in activists’ tactics as those who had been among the most vigorous supporters of swift roll-out and clinical trials of drugs began, after initial failures of some early drugs like ddI, to encourage more caution and time as the drugs that would ultimately offer a breakthrough, protease inhibitors, started to be developed. I still wonder what the activists think now about their early efforts and whether they were useful, looking back on that earlier period.
The opponents of action like arch-conservative Senator Jesse Helms of North Carolina are captured in all their vitriol. Helms is observed decrying those suffering from AIDS from having brought the disease upon themselves for engaging in unnatural acts. While this early ugly legacy is there, Helms’ later embrace of AIDS treatment globally is not, given the emphasis on the American epidemic.
These minor reservations aside, I found How to Survive a Plague emotionally resonant and evocative. I was in my early teens at the time, living in Texas, scarcely aware of ACT UP and the wider AIDS crisis. My interest in the subject came about in the late 1990s, just as the global scope of the AIDS crisis became apparent. While I had heard of ACT UP, the film makes you feel present in the vibrancy and sorrow of the period that only a video medium can. The film is going in to wider release this fall, and I encourage you to see it.