In the 1980s, the AIDS epidemic spread like wildfire through the gay community and beyond. By 1987, more than 40,000 people in the United States were HIV-positive. Despite the growing crisis, President Ronald Reagan didn’t say the word “AIDS” in public until 1985 and no FDA approval for a treatment was in sight.
The problem was twofold. Certainly, the government was doing its best to ignore the AIDS crisis because it primarily affected a marginalized community. But, there was another problem—the FDA didn’t have the resources to review and approve a backlog of drug applications to expedite a possible treatment. At the time, it often took years for a drug to come to market, while pharmaceutical companies waited to recoup the enormous costs of research and development of new medicines, inhibiting innovation.
Abandoned by society, often their own families, and now by their government, and facing a deadly epidemic with no cure or treatment, the LGBTQ+ community rallied. In March 1987, activists formed the AIDS Coalition to Unleash Power (ACT UP). The movement engaged in shocking and attention-grabbing protests, such as dumping the ashes of cremated victims on the White House lawn and wrapping a senator’s home in a giant, yellow condom. As their efforts helped make the epidemic unignorable for both the general public and those at the levers of power, the first HIV treatment, AZT, was fast-tracked by the FDA and approved in record time.
But ACT UP’s true impact on America’s healthcare system reaches far beyond that single drug. In 1992, in direct response to their activism, Congress passed the Prescription Drug User Fee Act (PDUFA), which changed the way drug approvals work in the United States.
PDUFA allows the FDA to collect a fee from drug manufacturers to fund the approval process for new drugs and—with this reliable funding now ensuring it has the resources it needs—requires the FDA to make decisions on New Drug Applications within a short, defined timeframe (typically 1 year). This simple change that was invisible to most people outside the industry has revolutionized the nation’s healthcare system, allowing drugs to come to market faster and into the hands of the people who need them most.
This is an example of the “curb cut effect,” which was named for—you guessed it—curb cuts, those small ramps cut into sidewalks at street corners. Implemented (sometimes using sledgehammers instead of permission) to help people who use wheelchairs navigate sidewalks independently, curb cuts were also a huge convenience to a wide swath of the public, including parents with baby strollers, people pushing grocery carts to their cars, and even skateboarders. Similar to PDUFA, the ubiquity of curb cuts is a result of awareness and activism, as people with disabilities spoke up and drove the passage of the Americans with Disabilities Act, which mandated curb cuts.
People tend to imagine that anything that adds a necessary benefit for one group of people must inevitably take something away from another group. The curb cut effect and PDUFA are proof of the contrary. When we help a marginalized community participate more fully in our society, we all win. And even if you can’t immediately see how that win applies to the larger population, that doesn’t mean there’s no impact. Lots of people who don’t work in the pharmaceutical industry may not even know what PDUFA is or understand how it has touched them, but there’s no telling how many lives have been saved because the ACT UP movement demanded that we find a way to bring life-saving therapies to market more quickly.
Though HIV hasn’t been eradicated completely, the efforts of ACT UP have helped ensure that it’s no longer a growing epidemic or a death sentence in this country. But that doesn’t mean we’ve achieved utopian parity in the world of healthcare. As we head into Pride Month 2024, there are still significant healthcare challenges that disproportionately affect the LGBTQ+ community.
Lack of acceptance from society and family members leads to higher rates of mental health issues, including substance abuse and suicide. Gender-affirming therapies, despite the robust medical evidence of their benefits, are often inaccessible to people who need them due to cost or politics. Fertility treatments that are covered by insurance for heterosexual couples often require same-sex couples to pay out of pocket for up to a year. And the continued and pervasive discrimination faced by the LGBTQ+ community contributes to higher rates of a variety of health problems compared with the general population and may lead them to avoid seeking treatment.
As we work together as an industry to address these challenges, the legacy and lessons of the ACT UP movement and its positive impact on our entire society should be remembered. Healthcare is not a zero-sum game. When we find solutions to the problems that affect the LGBTQ+ community, we all win.
