World AIDS Day arrives every year on December 1 and yet it remains one of the more confusing—and I’ll add, often dreaded—markers in the AIDS community. Advocates are often forced to choose between mourning the loss of loved ones or using the globally recognized day to highlight the persisting struggles holding us back from seeing an AIDS-free generation. As we face an incoming administration that campaigned on promises to “reshape” our healthcare with guidance from one of the loudest leaders in the anti-science and denialist movement, our impulse to resist has never been more clear or urgent. If the early AIDS movement and our ACT UP veterans taught us anything, it is how to collectively and fiercely fight for each other and never give up in times of despair.
I’m sometimes asked how I started in AIDS organizing. Although it’s hard to pin when it happened, I will always remember where I was when I did—Room 207 at the Lesbian, Gay, Bisexual & Transgender Community Center at an ACT UP (AIDS Coalition to Unleash Power) meeting in New York City. Right away, I knew I was at home. There is a lot of romantic historicization and depictions of ACT UP out there in the media, but I always hear surprise when people learn that ACT UP still exists and continues vital work across chapters.
When I joined ACT UP NY, we were a few years into the FDA’s approval of oral PrEP (pre-exposure prophylaxis). Although we had a drug on the market that, when taken daily, can effectively prevent people from acquiring HIV, its pharmaceutical manufacturer, Gilead Sciences, was marking up the price by 66%, potentially having users pay up to $24,000 out-of-pocket for an annual supply. This news of price gouging only became more disturbing when we discovered that the funding for the trials were sourced from US taxpayer dollars.
Almost a decade later, there are now several generic forms of oral PrEP on the market—but equality still isn’t here. According to the US CDC and referenced in PrEP in Black America’s For Us By US report, 91% of Black Americans who could benefit from PrEP have never received a prescription. This is especially important as we reflect on the recent (and exciting) results from the PURPOSE 1 and 2 trials for lenacapavir, a twice-yearly injectable PrEP that proved highly effective among cisgender women (PURPOSE 1) and gay men, trans, and nonbinary people (PURPOSE 2) in preventing HIV (it’s currently approved as a treatment for the disease, not a preventative measure equal to the daily oral pill). While the price is uncertain, we know that the cost of lenacapapir as treatment is currently a whopping $42,250 for the first year—when it could be incredibly profitable at the price of just $40 annually. We also know that lenacapavir’s manufacturer, once again Gilead Sciences (seeing a trend here?), announced they would license generic forms of the drug in 120 countries—excluding Argentina, Brazil, Mexico, and Peru—all countries that helped make the trial a success by participating.