On 1 December 1988, for the first time in history, a public day of awareness was celebrated. Called World Aids Day, it served as an attempt by the World Health Organization and the United Nations to bring awareness to a disease that had already killed 45,000 Americans by that point and tens of thousands more worldwide.
It was the first time that the Names Project’s Aids memorial quilt, which memorably included one coffin-sized panel for each person who had died of Aids, was displayed at the same time on multiple continents. Elected officials such as Chicago’s mayor, Eugene Sawyer, used the day as an opportunity to announce groundbreaking HIV/Aids public awareness and education campaigns.
Despite initial misgivings from HIV/Aids treatment activist organizations like Act Up, World Aids Day has evolved into a landmark day of international recognition – both to commemorate those lost and to create a platform for public officials and organizations to announce bold new initiatives to combat HIV/Aids and its spread.
This year, on the 35th anniversary of World Aids Day, activists shared their concerns about how the disease has been discussed in recent years.
“We want to make sure that as part of World Aids Day, that people understand that this isn’t just a moment for us to come and reflect. It’s actually a moment for us to come and fight again, because unfortunately we are facing existential threats due to just the ongoing dysfunction and most extreme viewpoints of conservatives in the House,” said Jeremiah Johnson, the executive director of Prep4All, an Aids prevention and treatment organization.
Kevin Robert Frost, the chief executive officer of the Foundation for Aids Research (Amfar), one of the world’s leading Aids research, treatment and prevention non-profits, agreed with Johnson, saying: “Funding to treat and prevent this disease has become a political football in Washington.
“We have all the tools we need now to bring the epidemic under control, but we are losing sight of that. And there’s great concern that it means we are going to start seeing a real backsliding in our efforts to try to control the epidemic here in America,” Frost continued. “That to me is the scariest narrative that’s going on right now.”
Frost pointed to this year’s fight to reauthorize the President’s Emergency Plan for Aids Relief (Pepfar), a bipartisan, international program first authorized by President George W Bush in 2003. The program is widely acknowledged as having saved millions of lives across the world in the two decades since its inception by providing people in developing countries with free access to effective HIV/Aids treatment drugs. Earlier this year, the reauthorization of Pepfar was caught up in the national debates about abortion – despite US laws preventing any money under Pepfar from going toward abortions.
“It was an extraordinary bipartisan effort to pass that bill and to fund that work over the last 20 years,” Frost said. “And it’s amazing to me that the bipartisan nature of that has really sort of fallen off. And despite pleas from people like former president Bush and others in Washington, Republicans have sort of targeted Pepfar.”
Frost added that “as a result of that, it wasn’t reauthorized by Congress for the first time” and noted that there was “tremendous concern about what that’s going to do globally and for America’s leadership role in the global fight against HIV/Aids”.
“Now we’re even seeing at the domestic level that there’s fights around cutting funding for HIV, for treatment, for prevention,” he said.
Johnson of Prep4All also points to government funding shortfalls as a consequence.
He noted that “House appropriators led by House conservatives proposed $767m in cuts to HIV funding for fiscal year 2024” and said: “Unfortunately, not enough people know about that.
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“In particular we need to make sure that … everyone is contacting their representatives to let them know that we need to save HIV funding and reject those proposed cuts,” he said.
Another domestic effort is a coordinated attempt to expand access to pre-exposure prophylaxis (Prep) drugs to prevent the spread of HIV.
“We are really in a time right now with Prep access, we’re seeing maybe 78% of white individuals who are most in need of access getting it, only 11% of Black individuals [and] only 21% of Latinx individuals,” said Johnson. “So we’re in a situation where if we don’t sort of have a cognizance about where we’re at in the movement right now, we could end HIV as an epidemic for white people in America, but never end it for communities of color, never end it for trans communities, for cisgender women, never end it for global communities.”
Avac, a leading HIV-prevention global non-profit, is also supporting the call for a national Prep plan.
“The Aids epidemic is not over until it’s over for everyone,” said Jason Rosenberg, the communications manager for Avac. “At least in the US, we’re advocating for a national Prep plan that could revolutionize how we see prevention, whether it be oral Prep, injectable Prep, which is now on the market, but is kind of hard to come by because of insurance barriers.”
However, as Frost explained, such a plan would require fighting efforts to politicize national and global HIV/Aids healthcare policies.
“We would love it if we could go back to a time when HIV wasn’t so political in the minds of people who nowadays see it as a political fight,” said Frost. “But we’re going to continue to advocate as best we can for appropriate programs that can reach some of these marginalized communities with the tools that they need, either for treatment or to protect themselves from getting HIV.”
In the decades since the first commemoration of World Aids Day, the Names Project’s Aids memorial quilt has been in storage. It has not been displayed in its entirety in more than a quarter century. Still, the panels and the lives they represent loom large, reminding us of the history and the ongoing work toward a cure.
Rosenberg added: “The only way forward is to ensure that long-term survivors and people living with HIV are always not only part of the conversation, but have space to lead those conversations.”
