15
Jan2013

by Joan Rachlin, Executive Director

A remarkable documentary, How to Survive a Plague (HtSaP), was shown at PRIM&R’s 2012 Advancing Ethical Research (AER) Conference last month. HtSaP was just nominated for an Academy Award last week in the Best Documentary category, and I am writing to recommend it to you because it has particular relevance for those working in the research ethics field. In addition to telling the story of the terrifying and tragic early years of the HIV/AIDS pandemic, HtSaP powerfully documents the efforts by the AIDS Coalition to Unleash Power (ACT UP) and the Treatment Action Group (TAG) to accelerate the development of drugs for AIDS at a time when there was nothing in the therapeutic cupboard. The film is packed with a palpable determination borne of impossible desperation, love, hope, tenderness, community, and heaping doses of inspiration, and you can stream it via Netflix.

How to Survive a Plague was directed by David France and edited and co-produced by T. Woody Richman. Full disclosure is necessary here because Woody is my cousin, and I could not be more proud of his work, which includes the Academy Award-nominated and Sundance Grand Jury Prize-winning documentary, Trouble the Water, in addition to Capitalism a Love Story, Fahrenheit 9/11, and 2002 Oscar winner Bowling for Columbine, among many other films.

While I could easily go on about Woody, that’s not my intention here today. Instead, I have two purposes in writing this post, the first of which is to tell you a bit about the audience reaction to HtSaP at the December AER Conference, and the second is to recognize and thank three longstanding and cherished members of PRIM&R’s community who were at the barricades during the early years of the plague.

First, the audience reaction to HtSaP at AER was, in a word, incredible. A facilitated question and answer session followed each of the two showings, and those who approached the microphones reflected a representative slice of the film’s heartbreak and humanity. Attendees spoke of their personal experiences with HIV/AIDS and/or about the loss of loved ones. They expressed their gratitude for the film, and eloquently and powerfully paid tribute to its timeless messages of activism, community, love, and hope during the unremitting despair of those dark days. Conference participants also noted the ways in which ACT UP and TAG irreversibly changed the federal drug approval process, and how their work led to, among other things, the Food and Drug Administration’s (FDA) willingness to have consumers on its many advisory boards (there were no consumers on FDA advisory boards in the 1980s and early 1990s, and now there are over 175).

In general, it was clear that watching the film unlocked many memories for those in the audience, and listening to them reminded me anew that concepts such as “informed consent” and “risk-benefit analysis” change when the therapeutic cupboard is empty.

Sadly, Spencer Cox, one of the ACT UP and TAG leaders featured in HtSaP, died on December 18 at the age of 44. David France noted that, “as an AIDS activist, Spencer helped spearhead research on protease inhibitors and played a central role in bringing the drugs to market — and saving eight million lives.” France also released this one and a half minute outtake from HtSaP that exudes the wisdom, compassion, and humanity for which Spencer Cox was well known in the movement.

Second, I’d like to give warm and heartfelt thanks to those three friends of PRIM&R’s, heroes all, who have been involved with the search for HIV/AIDS therapeutics since the pandemic first hit. Our heroes are Cornelius Baker, Susan Ellenberg, and Richard Klein—all of whom are PRIM&R “lifers.” Cornelius, Susan, and Richard were all in San Diego last month, and Cornelius and Richard facilitated the post-film discussions referred to above.

Cornelius is a longtime member of the PRIM&R Board, and he has been one of the most effective leaders of the HIV/AIDS movement. He has received many awards and high profile commission appointments as a result of his clarity, advocacy, humility, and brilliance, included among them The American Foundation for AIDS Research (amfAR) Award of Courage. I’ve included one of the many links about his work, as well as a statement by him on the occasion of receiving the amfAR award. The web is full of remarkable accounts of Cornelius’ achievements, and it was an honor to have his experience and expertise as a companion to the HtSaP showing in San Diego.

The next “hero” I want to talk about today is actually a “shero:” Susan Ellenberg, professor of statistics at the Hospital of the University of Pennsylvania, who was one of the few scientists featured in HtSaP. There were good reasons for that special status, since Susan not only met and engaged with the members of ACT UP and TAG, but also took the time to walk them through the maze of biostatistics that makes the world of clinical research inaccessible to so many of us. One activist, Gregg Gonsalves, paid tribute to her and a few other statisticians in an article describing how it was that the members of ACT UP and TAG were able to become lay scientists, and in doing so, change the HIV/AIDS world.

 
 

Last, but most certainly not least, is Richard Klein, director of the Patient Liaison Program in FDA’s Office of Special Health Issues, another longstanding and unfailingly wonderful PRIM&R faculty member and friend. Richard has been at the FDA for 36 years, many of which have been spent steeped in HIV/AIDS issues. This clip speaks to Richard’s deep and wide involvement with the pandemic. Richard moderated the Q&A during the second showing of HtSaP and, in the course of that session, spoke movingly of taking a young FDA colleague to see the AIDS Memorial Quilt when it was displayed on the National Mall in Washington, DC last summer in conjunction with the XIX International HIV/AIDS Conference. The colleague told him that he did not know anyone who had died of AIDS, which Richard found unthinkable given all of the losses experienced by those of us who lived through those years. This is yet one more reason why HtSaP should be required viewing for all, but particularly for younger professionals in the research ethics field.

All three of these friends of PRIM&R were part of the “boots on the ground” vanguard during those despairing early years, and we are grateful to them for sharing their experiences with our community for decades now. Cornelius, Susan, and Richard are three of the many in the PRIM&R community whose science, scholarship, and advocacy have made and are still making a difference, and they are why being associated with PRIM&R has been both a privilege and pleasure for me.

Before closing, one more shout out to David France and cousin Woody Richman for documenting the heroism, courage, brilliance, and effectiveness of the ACT UP and TAG members. It likely won’t surprise you to know that many members of the public believe that that AIDS is no longer a killer since the advent of protease inhibitors and the “cocktails,” but they could not be more wrong. Over 1.8 million people died from AIDS-related illnesses in 2010 and the number is expected to remain stable until we find ways to get life-saving drugs to those not only in resource-scarce countries, but throughout the U.S. as well. Those numbers and this film remind us that we still have many rivers to cross in the search for evermore effective drugs to combat HIV/AIDS.

 

I’d like to end by sending New Year’s greetings your way, and by thanking all those in the PRIM&R community for doing your parts to keep hope alive for those living with diseases. Research is the last best hope for many of them, and it is one of my fondest wishes that all who face health challenges will become not just “survivors,” but “thrivers.”

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