OOn December 1, 1988, a public awareness day was celebrated for the first time in history. Called World AIDS Day, it served as an effort by the World Health Organization and the United Nations to draw attention to a disease that had already killed 45,000 Americans and tens of thousands more worldwide.
It was the first time that the Names Project's AIDS memorial quilt, with its signature coffin-sized panel for each person who had died of AIDS, was exhibited on multiple continents simultaneously. Elected officials such as Chicago Mayor Eugene Sawyer used the day as an opportunity to announce groundbreaking public awareness and education campaigns about HIV/AIDS.
Despite initial misgivings from HIV/AIDS treatment activist organizations such as Act Up, World AIDS Day has become a landmark day of international recognition. – both to commemorate the lost and to create a platform for government 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 the way the disease has been discussed in recent years.
“We want to make sure that, as part of World AIDS Day, people understand that this is not just a time for us to come and reflect. It is actually a moment for us to come back to fight because unfortunately we are facing existential threats just from the continued dysfunction and most extreme positions of conservatives in the House of Representatives,” said Jeremiah Johnson, Executive Director of Prep4All , an AIDS prevention and prevention organization. treatment organization.
Kevin Robert Frost, the CEO of the Foundation for AIDS Research (Amfar), one of the world's leading nonprofit organizations in AIDS research, treatment and prevention, agreed with Johnson, saying: “Funding to treat and prevent this disease is a political football in Washington.”
“We now have all the resources we need to control the epidemic, but we are losing sight of that. And there is great concern that this means that we are going to see a real setback in our efforts to control the epidemic here in America,” Frost continued. “That to me is the scariest story 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 approved by President George W. Bush in 2003. It is widely recognized that it program has saved millions of lives around the world. twenty years since its inception, by providing people in developing countries with free access to effective medicines for the treatment of HIV/AIDS. Earlier this year, Pepfar's reauthorization was embroiled in national debates over abortion — despite U.S. laws preventing money under Pepfar from going to abortions.
“It was an extraordinary bipartisan effort to pass that bill and fund that work over the last 20 years,” Frost said. “And it's amazing to me that the bipartisan nature of that has actually disappeared. And despite pleas from people like former President Bush and others in Washington, Republicans have more or less focused on Pepfar.”
Frost added that “as a result, Congress has not reauthorized for the first time” and noted that there is “tremendous concern about what that will do globally and about America's leading role in the global fight against HIV/ AIDS.” .
“Now we see even at the domestic level that there is a struggle around cuts in HIV funding, treatment and prevention,” he said.
Prep4All's Johnson also points to shortfalls in government funding as a result.
He noted that “House appropriators led by conservatives in the House of Representatives have proposed $767 million in cuts to HIV funding for fiscal year 2024” and said, “Unfortunately, not enough people know about it.”
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“Above all, we need to ensure that… everyone contacts their representatives to let them know that we need to cut HIV funding and reject the proposed cuts,” he said.
Another domestic effort is a coordinated effort to expand access to pre-exposure prophylaxis (Prep) medications to prevent the spread of HIV.
“We're really in a time right now with Prep access, we're seeing maybe 78% of White individuals who need access most getting it, only 11% of Black individuals (and) only 21% of Latinx individuals,” Johnson said. “So we're in a situation where if we don't know a little bit about where we are in the movement now, we can end HIV as an epidemic for white people in America, but never for communities. of color, never end it for trans communities, for cisgender women, and never end it for global communities.”
Avac, a leading global HIV prevention nonprofit, also supports the call for a national preparedness plan.
“The AIDS epidemic isn't over until it's over for everyone,” said Jason Rosenberg, Avac's communications manager. “At least in the US, we're advocating for a national Prep plan that could revolutionize the way we see prevention, whether it's oral Prep, injectable Prep, which is on the market now but quite is difficult to obtain due to insurance barriers.”
However, as Frost explained, such a plan would require competing efforts to politicize national and global HIV/AIDS health care policy.
“We would love it if we could go back to a time when HIV wasn't so political in the minds of people who today see it as a political battle,” Frost said. “But we continue to advocate as best we can for appropriate programs that can reach some of these marginalized communities with the resources they need, either for treatment or to protect themselves from acquiring 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 exhibited in its entirety for more than a quarter of a century. Yet the panels and the lives they represent loom large, reminding us of history and the ongoing work of healing.
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 also have the space to lead those conversations.”