The Fascinating Story of How AIDS Activism Helped Usher in a "Right to Try" Movement - Freethink
Stories from the frontiers
of a changing world
Science

The Fascinating Story of How AIDS Activism Helped Usher in a “Right to Try” Movement

Since 2014, 31 states have passed legislation that would allow patients suffering from terminal illnesses to try medical treatments that haven’t been approved by the Food and Drug Administration. They’re called “right to try” laws, and the American medical community is in a heated debate with advocates over whether these laws and the practices they promote are good for patients, or even an effective means of getting experimental drugs into the hands of people who can’t benefit from treatments already on the market. Considering how many potentially ground-breaking treatments are still in the trial phase, the question of who can use what drugs and when will only get more attention as supporters of right-to-try laws continue to court and persuade state lawmakers.

And as the debate heats up, it’s worth revisiting the period of unrest that first drove the right to try movement to the forefront of America’s policy debate.

In the late 1980s…there was a single drug approved by the Food and Drug Administration permitted to help prolong the lives of people with AIDS.

In the late 1980s, Americans were dying by the thousands from the opportunistic infections that came from full-blown AIDS. There was a single drug approved by the Food and Drug Administration permitted to help prolong the lives of people with AIDS. This first drug, azidothymidine—or AZT—was approved for use in AIDS patients in what was a remarkably fast process for the FDA at the time: 25 months.

But AZT had some very serious side effects that caused other health threats, and not all AIDS patients could endure the treatment. The lack of “officially” approved treatment options gave rise to a large black market to provide access to non-permitted and foreign medicines in order to bypass the FDA.

This black market was most famously highlighted in the 2013 Academy Award-winning film “Dallas Buyers Club,” based on real-life drug smuggler (and AIDS patient) Ron Woodroof. Woodroof was not unique. There were groups of people across the country working to bring drugs into the United States from Mexico, Europe, and elsewhere, regardless of the FDA’s approval process.

nypl.digitalcollections.580d9750-c178-0130-a2d0-58d385a7b928.001.w

ACT UP protestors arrested in New York City in 1989/Digital Public Library of America

AIDS activists didn’t want to settle for such an environment. The AIDS Coalition to Unleash Power (ACT UP) formed in 1987 and became the largest and most significant activist group publicly fighting for the government and populace to address the growing crisis. Many Americans may remember their marches, protests, social activism, “die-ins,” and their “Silence = Death” slogan.

Their activism ran much deeper than calling for more spending on AIDS research and better access to health care. They were heavily involved in the push to convince the FDA and the National Institutes of Health (NIH) to not just approve drugs more quickly, but to reform their entire process of how the bureaucratic agencies and scientific communities were approaching the AIDS crisis.

The efforts were the focus of the 2012 documentary “How to Survive a Plague.” Their protests at FDA and NIH facilities featured chants like “AZT is not enough—give us all the other stuff!” At the same time, ACT UP had a “Treatment and Data Committee” that wasn’t about creating public spectacles but rather researching and keeping up with the latest information on research and taking ownership of treatment. They became experts in their condition until they were as familiar with the science involved as the researchers themselves.

Because of their commitment, as activists they were able to propose specific solutions, not just make demands. They were able to point out specific drugs that were approved for use in other countries that remained out of reach in the United States. Activist Peter Staley appeared on “Crossfire” to point out a drug he would find useful for his treatment that had been available over the counter in Japan for years. Also of note: On the show, host “on the left” Thomas Braden worried that loosening regulations to permit drugs would lead to “quack” medicines that could cause more harm, while the more conservative Patrick Buchanan defended the right of people with AIDS to take whatever drugs they felt might prolong their lives.

After some early activism of ACT UP, the FDA approved the use of a drug that helped fight blindness in some people with AIDS.

After some early activism of ACT UP, the FDA approved the use of a drug that helped fight blindness in some people with AIDS. But they didn’t stop with singular pushes for individual medicines. The activists developed a “National AIDS Treatment Research Agenda” in 1989 and introduced it to researchers and government officials. This agenda featured nuts-and-bolts technical recommendations on how and where to focus medical research to develop specific AIDS treatments.

It’s important to note that the success of their efforts didn’t always result in the best solutions. By the early 1990s it became clear to researchers that medicines that activists themselves had pushed were much less effective than previously believed. There were struggles within the activist community in how to approach next steps. The Treatment and Data Committee broke off from ACT UP and became the Treatment Action Group (TAG).

But neither the scientists nor the activists gave up, and now in 2016, HIV is a manageable illness with access to the right medicines. The lesson wasn’t really that people with life-threatening illness wanted to just down any drugs they could get their hands on and wanted the FDA to just rubber stamp everything. What these initial “right to try” activists accomplished is getting regulators and the medical community to treat patients as stakeholders in the drug approval process. ACT UP and TAG’s insistence in self-education and self-determination helped create a framework where citizens with serious illnesses weren’t just passive recipients of whatever remedies the government was willing to provide to them. 

Feature photo via Wikimedia Commons

Featured Shows

5 EPISODES
In July of 2011, the U.S. suspended its decades-long Space Shuttle program, officially ending an era of space exploration that began over half a century ago. Some have mourned its passing as a sign of the times – as evidence that we could no longer dare to dream. But unbeknownst to many, a new era of private space exploration has already begun... and it’s firing on all cylinders. The New Space Race is the story of a 21st-century revolution.
6 EPISODES
Superhuman is a Freethink original series about the amazing advances in medical innovation that are making the present look more like a sci-fi depiction of the future. Join us as we meet the engineers, entrepreneurs, doctors and patients who are giving people a new lease on life today, while building our superhuman future of tomorrow.
5 EPISODES
Across the globe, innovative entrepreneurs are racing to develop new businesses that could dramatically improve people’s lives. But startups are hard work, and success is far from guaranteed. Join us as we profile the next generation of challenger companies and get an intimate view of where they are on their journey to transform an entire industry—and change the world.
6 EPISODES
There’s an invisible war being waged. And we’re all part of it. Foreign governments are hacking major corporations. Major corporations are collecting massive amounts of consumer data. And the NSA is listening…to everything. But a new generation of programmers armed with powerful technology is rising up and fighting back. Freethink presents a new original series: Coded.