“Silence = Death.”
That was the mantra of determined AIDS activists who quickly concluded the U.S. government was not doing enough to combat the then-emergent AIDS epidemic, which first hit the headlines in 1981.
There was a distinct lack of federally coordinated action on AIDS for several key years right at the beginning of the epidemic, when it really mattered. Then-President Ronald Reagan couldn’t even bring himself to utter the word “AIDS” in public until 1985, four years after this calamity began.
So it was a jarring flashback to hear that as far the U.S. government is concerned, the annual commemoration of World AIDS Day no longer exists.
In 1988, the World Health Organization declared Dec. 1 World AIDS Day. The U.S. government has recognized this awareness day every year since its inception, but according to the New York Timesthe State Department has instructed employees — and grantees — not to use government funds to commemorate the day and to “refrain from publicly promoting World AIDS Day through any communication channels, including social media, media engagements, speeches or other public-facing messaging.”
This is personal for me. I got my start in public relations at the U.K.’s National AIDS Trust30 years ago. My first assignment: to raise the profile of World AIDS Day in ’90s Britain. This work was led by a team of tireless colleagues who were much more experienced than me, notably the indefatigable Keith Winestein.
I remember helping to drum up attendance at candlelit vigils in central London and working hard to keep HIV in the national news spotlight. Looking back, it was already becoming a challenge — a decade-plus into the epidemic — to keep journalists engaged on the issue.
This year’s edict from the State Department is a sad, though perhaps predictable, development. As the veteran advocate Peter Staley told the Times, the decision to mute World AIDS Day “seems petty and hostile.” Though it would fit with a calculated strategy by the administration to avoid being seen to support any causes that could be perceived as “woke” — including causes supported by the WHO, which the U.S. abruptly withdrew from and stopped funding this year.
Why this change? One reason, a spokesperson for the agency told the Times, is that “an awareness day is not a strategy.”
This is gaslighting at its finest. Because no one has ever suggested that. Of course, awareness days, in and of themselves, are not a strategy. But they can be an important pillar within a broader, multifaceted public health strategy to combat HIV (and many other diseases). They can serve as an effective focal point to raise public awareness of ongoing health challenges.
In fact, World AIDS Day is perhaps one of the most effective awareness days. After its launch 37 years ago, it rapidly became an annual fixture in global efforts to raise public visibility of HIV as a health threat, to commemorate those who had died of AIDS (approximately 44 million people worldwide at latest estimate), and to encourage global action to curb the epidemic, which remains persistent, and could yet worsen, according to UNAIDS’ annual epidemiological global report (published for World AIDS Day). The red ribbon awareness symbol, first conceived by the New York-based Visual AIDS Artists Caucus in 1991, rapidly became synonymous with World AIDS Day, and HIV awareness campaigns in general. In recent years, the White House commemorated World AIDS Day by hanging a giant red ribbon between its grand Corinthian columns and issuing presidential proclamations. This symbolism matters. But on a practical level, World AIDS Day was also an effective mobilization platform for new policy and funding announcements to address HIV across the public, private and philanthropic sectors.
This was particularly true in America. The U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) was first launched by President George W. Bush in 2003. Over the past 22 years, over countless World AIDS Days, the administration in charge has taken the opportunity to announce significant new expansions and evolutions of this landmark initiative.
To date, PEPFAR says it has invested over $110 billion in the global HIV/AIDS response, saving an estimated 26 million lives and preventing millions of HIV infections in more than 50 countries. The initiative is widely considered the single most effective public health campaign the (developing) world has ever seen.
But new PEPFAR announcements are unlikely this World AIDS Day. Perhaps the administration is wise to stay quiet. Studies project that this year’s U.S. cutbacks to foreign aid, including the shutdown of the U.S. Agency for International Development (USAID) and the planned closure of PEPFAR, potentially over the next two years, could result in an additional 10 million HIV infections and 3 million additional deaths from AIDS over the next five years.
While phasing out PEPFAR has been under discussion for years, the transition of the program into a vehicle for promoting “American innovation” (i.e., medical products) through bilateral agreements with developing countries (that will emphasize the need for “burden sharing”), appears to be well underway, based on the recent announcement about bringing lenacapavir, a twice-yearly shot that has a 99% success rate at preventing HIV, to the nations of Zambia and Eswatini through an arrangement between the State Department, Gilead Sciences and the Global Fund.
Yes, it’s a milestone moment that the first doses of the drug (1,000 doses to be exact) have arrived in these African countries just five months following lenacapavir’s approval by the Food and Drug Administration. This speed is admirable.
But it’s the speed of the PEPFAR transition — which really equates to a radical downsizing — that is worrying HIV advocates. And speaking as an HIV advocate, I believe that the target of delivering, by 2028, 2 million doses of lenacapavir is strikingly unambitious. Two million doses equate to reaching 1 million people, given that the drug needs to be administered every six months. UNAIDS reports there were around 1.3 million new infections globally last year alone, and is calling for a rapid expansion in access to this medicine to reach 20 million people in order to really reverse the HIV epidemic. That will require 40 million doses — every year.
Let’s hope Gilead’s delegation of manufacturing (for certain low- and middle-income countries) to six generic drug companies can scale up global production quickly. But that’s not guaranteed with complex biological medicines requiring injections, as we have seen twice in recent years, first with Covid vaccines, and more recently with Big Pharma struggling to manufacture sufficient GLP-1 injections for weight loss and diabetes.
The only way to overcome these challenges is a major coordinated global investment in a dedicated supply chain that is fit for purpose. It’s not yet clear, in the current climate of retrenchment, if this significant financial investment is going to materialize.
Perhaps, this World AIDS Day, the activists’ famous slogan needs an update. Something like:
Silence (+ Slashed Funding) = Death.
Gavin Hart has been working in health care public relations for 30 years, with extensive involvement in HIV advocacy for nonprofits, pharmaceutical companies (including Gilead), and public health entities.
