Sean Philpott: Buying Into The Club
I’ve never been a big fan of actor Matthew McConaughey, but his recent award winning performance in The Dallas Buyers Club might change my opinion of him. In that movie The Dallas Buyers Club, Mr. McConaughey plays the role of Ron Woodroof, a real-life Texas cowboy who was diagnosed with HIV/AIDS in 1985.
HIV/AIDS is now a chronic but manageable illness, at least for people in high-income countries who have access to highly effective antiretroviral drugs. At the time of Ron’s diagnosis, however, a positive HIV test was largely a death sentence. The first effective treatment for AIDS, zidovudine (AZT), was still in development and wouldn’t be approved by the United States Food and Drug Administration (FDA) until 1987. Access to life-saving drugs like AZT was largely restricted to patients enrolled in clinical trials.
Moreover, during the early years of the HIV/AIDS epidemic the disease was largely seen as affecting gay men, prostitutes and drug users. Discrimination against people living with HIV/AIDS was common: they were routinely kicked out of their homes, expelled from their classrooms, and fired from their jobs. Patients even faced discrimination at the hands of health care professionals. As the HIV/AIDS crisis unfolded, many doctors and nurses openly proclaimed that they would not be going anywhere near a patient with AIDS because of the personal risk.
Small wonder, then, that most people living with HIV/AIDS in the mid-1980s died within a few months of receiving a diagnosis. Ron Woodroof could have been just another statistic. His disease was relatively advanced at the time diagnosis, he was precluded from enrolling in a clinical trial of AZT for safety reasons, and he was largely abandoned by his friends and family because of the shame of having a ‘gay disease.’ But he chose to fight rather than succumb to a then-untreatable illness. Thus began Ron’s prolonged struggle, which only ended in 1992 when he passed away from an AIDS-related illness (nearly seven years after doctors gave him but a few weeks to live).
Denied access to the then-experimental drug AZT, for instance, Ron began to self-treat using unapproved and illicitly obtained antiviral medications. Soon, he and his colleagues were routinely traveling to Mexico, Japan, Israeli and the Netherlands to purchase antiviral drugs and treatments that were not approved or available for use in the United States. They began providing these drugs to those living with HIV/AIDS – primarily members of stigmatized communities like gay men and drug users – via the commercial operation that gives the movie its name.
Ron Woodroof also (albeit unsuccessfully) took the FDA to court to force them to allow the importation of the experimental HIV inhibitor Peptide T from Denmark. In doing so, he became part of a larger movement in which community-based organizations and activists began to set their own agenda for biomedical research and treatment. Outraged by federal regulations and policies that slow the development, testing and distribution of new drugs to treat HIV/AIDS, for instance, activists in New York City, San Francisco and elsewhere established organizations like The Gay Men’s Health Crisis, Project Inform, AIDS Coalition to Unleash Power (ACT-UP) and the Treatment Action Group. Like Ron, these organizations helped to change the way that clinicians, researchers, drug companies, and local, state and national governments addressed the HIV/AIDS epidemic.
In the documentary film How to Survive a Plague, we see how ACT-UP mobilized a national demonstration at the FDA in October 11th, 1988. On that day, over 1500 activists from around the world surrounded and effectively shut down FDA headquarters. Shortly thereafter, in consultation with ACT-UP and like-minded organizations and activist groups, the agency instituted new policies to speed up the testing, approval and distribution of HIV/AIDS drugs. Similar demonstrations at the US National Institutes of Health lead to other significant changes in how clinical trials were designed and conducted, such as the inclusion members from afflicted communities on trial committees and protocol teams.
What these two movies, the semi-fictional Dallas Buyers Club and the documentary How to Survive a Plague, show is how a single individual or a small group of dedicated activists can have a significant and long-lasting impact on public policy, even in the face of private apathy or open hostility. At the start of the HIV/AIDS epidemic, the public response to the disease was tepid at best. Federal funding for public health had been repeatedly cut and officials seemed unconcerned about the disease, so long as it largely affected marginalized members of society like gay men and drug users.
All of that changed thanks to the efforts of Ron Woodruff and those like him. They fought injustice and prejudice against people with HIV/AIDS, and demanded increased government resources for fighting the disease. Since then activists and advocacy groups have become an increasingly integral part of biomedical research and clinical practice, not just for HIV/AIDS but also for diseases like breast cancer, Alzheimer’s and autism. There is still a long way to go – community advocates and activists are not always fully empowered and equal members of research and treatment teams, and the more wealthy and connected organizations often dictate the topic of conversation – but public health research and practice is vastly improved from the highly politicized approaches of the past.
A public health researcher and ethicist by training, Dr. Sean Philpott is Director of Research Ethics for the Bioethics program at Union Graduate College-Icahn School of Medicine at Mount Sinai in Schenectady, New York. He is also Acting Director of Union Graduate College's Center for Bioethics and Clinical Leadership, and Project Director of its Advanced Certificate Program for Research Ethics in Central and Eastern Europe.
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