After recovering from seeing people alive that I worked with in ACT UP that are now dead, I began to have second thoughts about this beautifully crafted narrative-like documentary. David France is a well known magazine writer. His personal style I would suggest is high-end tabloid journalism. He picks a hot button subject and then tailors his article to make sure it sizzles, often leaving out critical facts that would complicate his story telling. It may work for New York magazine but violates some of the basic rules as I understand them of documentary filmmaking. He picks and chooses facts that push his narrative but violates the search for truth and integrity that is essential to authentic documentary filmmaking.
In How To Survive A Plague, his subject is the Treatment Action Group (TAG), a break-off group from ACT UP-NYC. TAG was emboldened by Larry Kramer’s demand for fast tracking experimental drugs into bodies in trouble. TAG members became known as “Larry’s Storm Troopers;” they had all been active members of ACT UP. First they seceded from the ACT UP Treatment and Data committee and then, because of Kramer’s opposition, failed in their attempt to appropriate ACT UP’s treasury and take it with them. They wanted out of ACT UP, leaving behind the debate raging over the lack of drug testing in women and children’s bodies, clean needle distribution and direct action targets. Only adult white male bodies were being tested in all but a very tiny number of clinical trials. TAG choose rather to sit inside at the table with federal government officials and PHARMA reps while ACT UP demonstrated in the streets. Elinor Burkett’s The Gravest Show in Town is the best examination of the pitfalls and merits of such a strategy. TAG was, with PHARMA support, successful in fundamentally changing the rules of clinical trials.
This change not only impacted the AIDS community, but also changed the protections for any clinical trial participant including those conducted on prisoners. No longer were PHARMA or the government responsible for any failures or negative side effects care. They was no longer required to provide when effectiveness had been established, the drugs free of charge to any trial participant who wanted then. Those rules had been in place to protect clinical trial participants. These were critical changes in the trial rules relieved the sponsors of the clinical trial of almost any liability and responsibilities other than providing the product being tested and collecting the researchers data.
TAG was desperate as most of their members were either HIV+ or had full blown AIDS. It was a time when people were dropping dead daily.
The Center for Disease Control, rather than compromising, caved in on all their legitimate safety issues in place that TAG, with the support of PHARMA, demanded be changed. Resulting in TAG members and their doctors having fast track access to still experimental drugs; drugs without data on dosage and side effects documented. While this access did in fact prolong some people’s lives, it also caused deaths because of lack of information regarding dose levels and interactions. This was particularly true with the drug DDI. The Treatment and Data members who pushed hardest for the fast tracking of experimental drugs like DDI were the same members who left to form TAG.
Members of ACT UP who through their TAG connections got access to the trial drugs died quickly. Eventually dosage levels were lowered and access became widespread, but not until some members of ACT UP had died from high dose DDI use. All of this is left out of Plague, except for a vague afterthought reference to finally questioning how fast to fast track unproven. This shocking lack of respect for facts and context is what ultimately makes Plague a well crafted fairy tale and a dishonest documentary.
David France choose two men from ACT UP to focus his story telling.
The charismatic Bob Rafsky, who came out in his early forties, responsibly leaving a marriage and a child and became sick with AIDS. While supportive, Rafsky was not a member of TAG. He was a member of a different ACT UP cell working on finding a cure for AIDS/HIV; he did not leave ACT UP. Rafsky, in many ways, was the public voice of anger in ACT UP. He saw himself covered with KS lesions knowing he was dying. Angry and articulate, Bob Rafsky was fearless even when weak and wasting away. Standing up to Bill Clinton is no easy task, but Rafsky did, as seen in the documentary
The other was the very photogenic ex-Wall Street wiz kid, Peter Staley who after his diagnosis mid-80s with AIDS, lost his job. It was known within ACT UP at the time that Staley, rather than suing for bias compensation choose to settle for an undisclosed amount, rumored to be in the high six figures. As is usual in settlement, the terms were subject to strict non-disclosure legal restrictions. Staley was one of the few people with AIDS in ACT UP that had that kind of money. He had also been one of stars in the Gay Men’s Health Crisis safe sex videos directed by Jean Carlomusto. US Senator Jesse Helms had attacked these educational videos on the U.S. Senate floor interviewwith–sex–in–an–epidemic–director–jean–carlomusto
Staley even became entrepreneurial as an activist with a profitable mail order AIDS drug delivery service which he took over when the two founders died of AIDS. This service provided a cover for sick people who were afraid, because of potential risk to career and reputation, to disclose that they had AIDS/HIV to their insurance companies. It protected their identity in acquiring drugs. Staley was the activist chosen by the International AIDS Conference, the year they met in San Francisco, to be the voice of AIDS activism from the podium. He hobnobbed with the likes of David Geffin, Elizabeth Taylor and Dr. Matilda Krim. After the release of protease inhibitors (the Cocktail), Staley like many other HIV+ men for whom the new drugs actually worked (about 50 % of those who had been on the drug trail previously), was given an extension on life. Yet, he fell into the sinkhole of crystal meth addiction like so many other gay HIV + men. In his later years, he finally cleaned up and to his credit, devised a crystal meth educational campaign targeting gay meth addicts. This is worthy of a separate documentary.
While there were many women active in ACT UP, only two were insiders in TAG: Dr. Iris Long, a scientist who taught basic science to the TAG members and inspired Mark Harrington to write the TAG treatment manual. He was awarded a MacArthur Genius grant of ($250,000). The other was Garance Franke-Ruta, a 17 year old healthy teen. TAG was a white, gay male dominated group.
When Larry Kramer, who had inspired the members of TAG to take action, became in TAG’s eyes more a liability than as asset, they sat down with PHARMA reps and government agency honchos and tossed him aside.
Only the San Francisco speech is referenced in France’s Plague. These are some examples of the critical information left out by France to advance his story telling. Seductive in craft, Plague in fact is not an honest documentary. It is like an expensive, well made Madison Avenue perfume ad (think Dior or Chanel) masked in social justice costuming. France’s product skims the surface creating like the best of Hollywood action films larger than life heroes to build to a crowd cheering anthem rather than presenting the complicated construction of the emblematic, history-changing, crucial AIDS activist group. ACT UP deserves better, as does TAG. Today, Larry Kramer can be heard saying TAG’s success killed ACT UP.
I recommend you look at Jim Hubbard and Sarah Schulman’s United In Anger, a story of ACT UP united–in–anger–actup–documentary–trailer/ and David Weissman and Bill Webber’s, We Were Here WeWereHeretrailer to get a more honest and realistic look at AIDS and the movement that it produced to fight back against bias and discrimination and for finding a cure as they build a community response to care for the sick and dying and to educate people how to stay alive and still be sexual.
(cc) Jim fouratt September 12 2012