Updated: Jul 24
Editor’s Note: Maeleigh Tidd delivers another thought-provoking post in our Pharmaceutical Inequalities series. She reaches back to the 1980s to consider how ACT UP protests led to greater affordability of HIV drugs, and argues that the persisting structural inequalities must be addressed by EHEI. The Pharmaceutical Inequalities series is funded by the Holtz Center and the Evjue Foundation.
In 1987, six-years into the rampant spread of the human immunodeficiency virus (HIV) and progression of acquired immunodeficiency syndrome (AIDS) leading to 40,000 deaths in the U.S., the FDA approved the first known antiviral drug for the treatment of AIDS. The approval of AZT (zidovudine) was the first scientific breakthrough in treating, and potentially ending, this “death sentence” of a disease. Yet, as the only treatment option available to the growing number of vulnerable and dying individuals with HIV/AIDS, it was outrageously unaffordable with a price tag of over $10,000 per year.
This drug profiting and the overall poor response to the epidemic at hand, led to the formation of the non-partisan group Aids Coalition to Unleash Power (ACT UP), a group of LGBTQ+ activists ‘united in anger and committed to direct action to end the AIDS crisis’.
Image credit: NYC LGBT Historic Sites Project
Rightfully so, on March 24th, 1987, roughly three-hundred ACT UP members marched to the intersection of Wall Street and Broadway to protest the profiteering of pharmaceutical companies on AIDS drugs, specifically Burroughs Wellcome (the manufacturer of AZT). Protestors disrupted NYC morning traffic by laying down in the streets, chanting, and holding signs to “make a point” on the lack of attention and priority the government had given to fight AIDS. Their call for action demanded the release of affordable drugs, public education, and the enactment of policies to end AIDS-related discrimination.
It took Burroughs Wellcome two years and a second, perhaps iconic, ACT UP protest to respond to the growing deaths of those living with HIV, and the demands, to provide an affordable drug. In 1988, ACT UP led a rally of hundreds in front of the New York Stock Exchange, again to protest pharmaceutical price-gouging. A handful of members – Peter Staley, Lee Arsensault, Greg Bordowitz, Scott Robbe, and James McGarth – infringed the Stock Exchange by chaining themselves to the VIP balcony and dropping fake $100 bills onto the trading floor, which stopped the trading for the first time in history. Four days after this demonstration, Burroughs Wellcome lowered the prices of AZT.
“Hey, hey, FDA, how many people have you killed?” ACT UP members chant at a 1988 protest at the Food and Drug Administration
These successful demonstrations were only the beginning of protests for ACT UP and their fight for sustained investment in HIV/AIDS research, equitable access to HIV/AIDS treatment and prevention, and the dismantling of HIV/AIDS-related stigma, discrimination, and poverty – the structural drivers of this epidemic.
In the past 35 years, ACT UP has grown worldwide to bring widespread attention to the disparities and inequities involved in the treatment and prevention of HIV/AIDS. The coalition has enacted change by protesting against influential stakeholders in the provision of HIV/AIDS care, such as the Food and Drug Administration (FDA), the Centers for Disease Control and Prevention (CDCP), the National Institute of Health (NIH), insurance companies, President(s) of the United States, and world leaders. Their fight doesn’t end until HIV does!
Since 1987, the antiviral drug industry has significantly increased, now offering over two dozen types of antiviral drugs for the treatment and prevention of HIV/AIDS, making this once-death sentencing disease a treatable, chronic health condition. Fortunately, with the voices of ACT UP and others, people living with HIV are not faced with the same pharmaceutical inequalities they once were. Today, there are numerous resources available to cover, or share, the cost of HIV drug-therapies, particularly through the expansion of health access and insurance under the Affordable Care Act and the Ryan White HIV/AIDS Program.
Yet, other disparities and inequities persist in the care of HIV, ultimately barricading the end of this epidemic.
Despite the decreasing trend of new HIV infections in the U.S., there appears to be gaps in care among those living with HIV. As of 2019, there is an estimated 1.2 million people living with HIV in the U.S., of them, only:
Image credit: Centers for Disease Control and Prevention
81% were linked to care
76% had received HIV medical care
58% were retained in care
66% achieved viral suppression
Furthermore, as HIV continues to disproportionately impact racial and ethnic minorities, there are disparities in treatment of care to achieve viral suppression among these populations.
A key strategy of the Ending of the HIV Epidemic Initiative, involves treating people with ‘HIV rapidly and effectively to reach sustained vial suppression’. The Initiative aims to reach 95% of viral suppression by 2030, which will require: (1) promptly linking newly diagnosed individuals to HIV care and treatment, (2) finding innovative and effective ways to re-engage those who are living with HIV but are not in care, and (3) supporting those already in care but are not virally suppressed. Current work-in-progress to achieve this goal involves providing more accessible and engaged medical care by expanding telemedicine services in jurisdictions of highest HIV prevalence and incidence. Unfortunately, though, telemedicine does not address all treatment-factors involved in this epidemic. Other efforts are needed to address the structural drivers of HIV, specifically HIV/AIDS-related stigma, discrimination, and poverty, and the downstream challenges that accompany them. And this goes beyond just “acknowledging them”.
ACT UP cannot be the only group to tackle these structural drivers. We are less than eight years away from the targeted deadline to end HIV. What other plans, efforts, and resources does the government have to truly address the roots of HIV disparities and inequalities?