Some time ago, I finally saw How to Survive a Plague, a moving documentary chronicling the early days of the HIV epidemic in the United States and the origins of the activist movement ACT UP. In particular, the film brings to life the startling denial of the U.S. government and the impact of inaction by agencies like the FDA. Angry protests took place outside the Rockville campus, the likes of which could never happen today in a post 9/11 world.
While I’ve understood the human toll all too well in numbers and seen the impact on lives especially in sub-Saharan Africa, the thin, wan look of mothers and children waiting to receive anti-retrovirals outside a clinic in Uganda, and know that the prevalence here in DC is 2.7%, I don’t think I’ve ever paid as much attention to the physical manifestations of the condition as it progresses unchecked. The eventual blindness and incapacitation of the spunky Jesus-dressing activist Ray Navarro and the growing Kapsosi’s sarcoma spots on the face of father Bob Rafsky as they descended into AIDS and approached death was sad and chilling. In an additional heartbreak, activist Spencer Cox died in February 2013 shortly after the documentary’s release. A man who had devoted much of his life fighting for treatment died seemingly because he no longer had the will to go on.
The way that director David France has edited the archived footage – new clips, video, interviews, etc. – allows the characters in the story to speak with their own voice. We follow them all to the present day – some make it, and many die.
The documentary shows us the dissent that grew within ACT UP between those focused on grassroots activism, and those wanting to work more closely with the government and other stakeholders. The latter eventually formed into the Treatment Action Group (TAG). But what I found remarkable really was that the documentary showed us the ability of non-medical individuals like Spencer Cox, a playwright and Peter Staley, an ex investment banker, to wrap their heads around scientific data and share information about the disease with others, and to not only understand and influence the process of drug approval from scratch, but have a hand in designing the accelerated trials that led to the approval of the first effective HIV drugs.
After the documentary, my husband – a scientist himself – asked me why the epidemic was initially detected among a population of gay males in California and New York. (Though, it wasn’t long before it was detected in other vulnerable groups and the broader population.) I’ve spent so much time countering stereotypes and social stigmas, and advocating for the importance of treatment, prevention, and family and community support, and mainstreaming HIV into family planning and reproductive health efforts that I hadn’t given enough thought to the epidemiological history.
According to the CDC, gay, bisexual, and other men who have sex with men are more severely affected by HIV than any other group in the United States. Anal sex without a condom has the highest risk for passing HIV during sex. Yet, the CDC’s clinical explanation doesn’t give us the complete picture.
I picked up the first book on my bookshelf that I felt could help answer this question, Laurie Garrett’s The Coming Plague (1995). Alas, there was no specific chapter on HIV as the focus is on newly emerging health threats. I flipped to the forward, which was written by Dr. Jonathan Mann, former director of the AIDS program at the World Health Organization and at the time he wrote this, held several positions in public health and AIDS at Harvard. I’ve read large parts of this book many times and yet it has escaped me that Mann wrote the intro.
Mann writes that “the discovery of AIDS, in California in 1981,… resulted from a series of very fortunate circumstances….Delay in discovering AIDS could have resulted from any or all of the following:
- if HIV took longer to cause detectable, clinical illness (AIDS);
- if the immunodeficiency of AIDS resulted in an increase of more typical infections rather than the easily recognized, unusual opportunistic infections (Pneumocystis carinii pneumonia) or cancers (Kaposi’s sarcoma);
- if AIDS had not clustered among active, self-identified gay men, but rather had been spread more broadly within society;
- if AIDS had not occurred within a country (U.S.A) with a highly developed disease surveillance system, capable of linking reports of cases from many different geographical areas;
- and if the science of human retrovirology had not been recently developed, including techniques for detection.
According to Mann, chance and circumstance led scientists to quickly detect a new health threat in AIDS. The PBS Frontline documentary The Age of AIDS (2006) reiterates that the clustering around urban centers occurred at a time when the gay community had achieved important gains in civil rights, the right to live openly and simply be themselves. In other words, bad timing played a role.
Mann was the director of the Francois-Xavier Bagnoud Center for Health and Human Rights at Harvard until he and his wife Dr. Mary Lou Clements-Mann, head of Vaccine Sciences at Johns Hopkins Bloomberg School of Public Health, died tragically in the 1998 crash of Swissair 111 en route from Geneva to New York. Mann headed FXB long before my time working there and he was legend. Upon learning about this event, I was forlorn that I’d never have the opportunity to meet this great man. Something about the story had fascinated me – maybe because it combined two of my obsessions, the HIV/AIDS and airplane crash mysteries. He would never be in my life. And yet, there he was, illuminating my question in the moment that I had wondered it.
The fight against HIV and AIDS is a marathon, and I felt hopeful and glad for the insights from France and Mann. Along with Dallas Buyers Club and the upcoming HBO film The Normal Heart (starring the cuter than cute, cuter than Anderson Cooper, Matt Bomer, among others) and based on the play of the same name by Larry Kramer, a founder of ACT UP and Gay Men’s Health Crisis, there seems to be a resurgence in deriving social and cultural insights from the early reactions and response to AIDS. May there be lessons we can learn from for the work ahead that still needs to be done.