The Story of Us: How Celebrity Voices Have Shaped HIV Advocacy for Four Decades
On April 1, Taylor Swift dropped a surprise music video for her song "Elizabeth Taylor," directing streaming royalties to the Elizabeth Taylor AIDS Foundation (ETAF). Two weeks earlier, on March 18, stars from six Real Housewives franchises descended on Capitol Hill to press lawmakers on the thousands of Americans at risk of losing access to HIV medications. Three days before that, the Elton John AIDS Foundation's (EJAF) annual Oscar viewing party raised $10.6 million for the fight against HIV. And last week, Time reports that Ciara has re-recorded her hit "1, 2 Step" for Gilead's "One2PrEP" campaign to raise awareness about pre-exposure prophylaxis (PrEP), including a twice-yearly injectable that reduces the risk of HIV by 96% to 100%.
That is a lot of celebrity firepower pointed at HIV in a very short window. And the timing matters, because the policy ground beneath people living with HIV is shifting fast.
According to KFF data cited by The 19th, 18 states plus Washington, D.C. have already cut AIDS Drug Assistance Programs (ADAPs), and 12 more are weighing further reductions. Federal funding for these programs has remained flat since 2014. Florida has slashed ADAP eligibility from 400% to 130% of the federal poverty level, a move expected to cut more than 10,000 people from the program. The state also plans to stop covering Biktarvy, the most widely prescribed antiretroviral medication in the country. Medicaid cuts signed into law have compounded the pressure: roughly 4 in 10 people living with HIV rely on Medicaid. And as Lindsey Dawson, director of LGBTQ health policy at KFF, told The 19th: drugs have gotten more expensive, more people living with HIV are relying on Ryan White, and the funding has not kept pace.
So when NeNe Leakes, Erika Jayne, Phaedra Parks, Melissa Gorga, Candiace Dillard Bassett, Marysol Patton, and Luann de Lesseps show up to Washington to talk about PrEP access and ADAP cuts alongside lawmakers including Senators Tammy Baldwin and Cory Booker, that is a megaphone being handed to a message that desperately needs one. Dillard Bassett, who worked in the White House during the Obama administration, put the stakes plainly: "The science to end HIV already exists." The challenge, she said, is making sure everyone has access.
Some voices in the advocacy community have grumbled about celebrity involvement in HIV work. The criticism is familiar: they could do more, say more, give more. Maybe. But this critique has a short memory, and the historical record is worth revisiting.
The Blueprint
In the summer of 1985, Elizabeth Taylor was trying to organize the first major celebrity AIDS fundraiser in Hollywood. Studio heads who had profited millions from her films refused to take her calls. Friends declined invitations. As Taylor biographer Kate Andersen Brower has documented, Taylor was told repeatedly to stay away. The industry was, in Taylor's own words, "turning its back on what it considered a gay disease." She would later recall the moment of resolve: "I finally thought to myself, Bitch, do something yourself."
The thing that changed the calculation was Rock Hudson's public AIDS diagnosis in July 1985. His disclosure mobilized Hollywood and forced the Commitment to Life dinner to move to a larger ballroom. The event raised $1.3 million for AIDS Project Los Angeles. Within two months of Hudson's announcement, Congress approved a significant increase in AIDS research funding. And President Reagan, who had mentioned AIDS publicly for the first time only two days before that dinner, did not deliver a formal address on the crisis until May 1987.
Taylor went on to co-found the American Foundation for AIDS Research (amfAR) in 1985 and establish ETAF in 1991, a foundation structured so that 100% of every donation goes directly to the cause. She testified before Congress three times in support of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. Over the last 25 years of her life, she is credited with raising over $100 million for HIV/AIDS-related causes. As researchers Noland, Goodale, Marshall, and Schlecht documented in their 2009 study in the Journal of Health & Mass Communication, Taylor emerged as "the leading celebrity voice and arguably the dominant HIV advocate at a time when there was a political vacuum in HIV leadership."
She did not fill that vacuum alone. Magic Johnson's 1991 disclosure that he was HIV-positive generated 259 AIDS-focused news stories in a single week and caused calls to AIDS hotlines to more than double overnight. As a heterosexual African-American athlete, Johnson broadened the public's understanding of who HIV affects. The red ribbon debuted at the 1991 Tony Awards as a symbol of solidarity, driven by the theater community that had been devastated by the epidemic. Princess Diana's 1987 handshake with an AIDS patient, without gloves, challenged the panic around casual contact at a time when hospital workers were leaving meals outside patients' doors. Elton John, who has said he should have died in the 1980s alongside friends like Freddie Mercury and Rock Hudson, founded EJAF in 1992. The foundation has since raised more than $650 million across 3,100 projects in 102 countries.
Why This Pattern Holds
The data on celebrity impact in HIV awareness is clear. When Charlie Sheen publicly spoke about his HIV status in 2015, the American Psychological Association documented a 265% increase in HIV-related news coverage and 1.25 million searches for HIV, condoms, testing, and symptoms on the same day. As Noland et al. concluded in their generational analysis: celebrities serve as "vehicles and embodiments of concern that act as proxies for their various audiences" and "maintain the primacy of a crucial issue in otherwise fickle media and political spheres."
Ronald Bayer, an expert on AIDS history at the Columbia University Mailman School of Public Health, has also been careful to note that celebrity advocacy has always been a complement to grassroots work, not a substitute. The activists built the movement. The celebrities amplified it to audiences that grassroots organizing alone could not reach.
That dynamic is playing out again right now. The "Housewives on the Hill" event, organized by MISTR, a telemedicine PrEP provider, put cameras and reporters in rooms where lawmakers were hearing directly about the ADAP crisis. Marysol Patton, an original cast member of The Real Housewives of Miami, connected the policy to its human cost in her home state: "When programs like ADAP are weakened, working-class people can't access this treatment." Florida ranks third in the nation for HIV diagnoses.
At the EJAF Oscar viewing party, Sheryl Lee Ralph, a producer on the documentary anthology Unexpected about Black women living with HIV, told Variety that upticks in diagnoses among women of color across the South demand attention, and that many women still have no idea PrEP is available to them. Women accounted for 1 in 5 new HIV diagnoses in the United States in 2022, and new diagnoses occur disproportionately among Black women.
As Fran Drescher put it at the same event: "If you have celebrity and you have social reach, if you don't use it, you're wasting it."
Something Worth Sitting With
We spend a lot of time in this space covering threats: funding cuts, Medicaid erosion, the hollowing out of public health infrastructure. Those fights are real and they are ongoing. But in the span of three weeks this spring, a cross-section of famous people used their platforms to put HIV back in front of millions of people who may not read policy briefs or follow ADAP eligibility changes. They directed money to organizations doing direct-service work. They sat in rooms with lawmakers and talked about PrEP access and Ryan White funding.
Could they do more? Sure. That question applies to all of us. But Elizabeth Taylor started this work in 1985 by simply refusing to be silent when silence was the norm. Forty-one years later, that same impulse is still producing results. The science to end HIV exists. The tools, from antiretroviral therapy to twice-yearly PrEP injections, are here. What we need now is the political will and public attention to make access universal. And any platform, any voice, any audience willing to carry that message forward is one we should welcome.