How to Survive a Plague is a moving chronicle of the onset of the AIDS epidemic as seen through the lens of the activists who mobilized to identify and make available the effective treatments we have today. Beginning at the start of the epidemic, when little was known about the HIV virus and even hospitals were refusing to treat AIDS patients out of fear of contagion, the film follows a group of leaders in the groups ACT-UP and TAG. Using existing footage interspersed with current-day interviews, it tells the story of how patients and concerned allies pushed the research community to find a way to treat what was then a lethal disease.
The film’s portrayal of the U.S. Government, specifically then-President George H. W. Bush and high ranking officials in the Food and Drug Administration, is damning. As hundreds of thousands of people became infected with HIV and the death toll rose, prejudice against marginalized groups (especially gay men, IV drug users) contributed to a lack of urgency about the need to learn how stop the spread of the virus and how to treat the opportunistic infections that killed people with full-blown AIDS. In contrast, footage of demonstrations, meetings, and conferences highlights the courage of the activists who risked and endured discrimination, beatings and arrests to bring attention to the need for more research.
But How to Survive a Plague is more than a documentary about the power people have to make change when they join together to demand action. It also is a provocative commentary about unintended consequences. I saw the film while attending the annual Advancing Ethical Research Conference of Public Responsibility in Medicine and Research (PRIM&R). In that context, I was especially interested in the way How to Survive a Plague highlights an interesting ethical issue in clinical research. Namely, the problem of protecting people so much from research risks that the protection itself causes harm.
Of course, the inertia of politicians and others was a tragedy of epic proportions. But people infected with HIV had another obstacle to contend with. They also were prevented from voluntarily participating in drug studies by well-intended systems designed to minimize the likelihood of adverse events. These systems, developed in response to concerns about prior research abuses, erred on the side of protection—to the detriment of the people for whom discovery of an effective treatment literally was a matter of life and death.
In fairness, it is important to consider the historical context within which these events transpired. When you consider that the discovery of the HIV virus happened less than ten years after the public outcry following disclosures about the PHS-funded Tuskegee Syphilis Study, it is not surprising that the U.S. government was careful—exceedingly so—not to rush into the conduct of experiments using vulnerable subject populations. The human research regulations at 45 CFR 46, based upon principles articulated in The Belmont Report, had just begun to take hold. The Belmont Report (and the ensuing regulations) compelled attention to justice as a foundational principle of human subject protection. The understandable emphasis of regulators and civil rights activists at the time was on the aspect of justice that has to do with protecting the vulnerable from exploitation.
Of course, another aspect of justice is fairness of access. To be excluded from research—especially when it has the potential to make you better—can be unjust. It also can be a violation of the Belmont principles of respect for persons (in the sense that a person’s own desire to participate is overridden by other considerations) and beneficence (in the sense that more research done in more people can yield results that benefit patients and others more quickly).
Clearly, we need laws and high ethical standards to conduct research responsibly. History has shown that researchers without clear boundaries and systems of enforcement can commit highly unethical, even criminal, acts. So, for the most part, our regulatory focus on avoiding harm has been appropriate. But, as is shown so powerfully in How to Survive a Plague, it’s possible to protect people too much. When you prevent people facing a fatal disease from participating in research, you can actually protect them to death. Fortunately, the activists in the film challenged the government and the pharmaceutical industry to conduct more research more quickly than our customary safeguards allowed. Thanks to them, millions of HIV positive people around the world are living full—and long—lives.