PEPFAR Has No Plan for World AIDS Day Data Release

Annual December 1 release date switched to "TBD" in the past 60-70 days.

The US President’s Emergency Plan for AIDS Relief (PEPFAR) has, at some point in the past 60-70 days, removed World AIDS Day from its calendar for public data sharing.¹ As of August 8 2025, World AIDS Day , which falls on December 1, was the sole remaining milestone on the data.pepfar.gov calendar. On that date, all of the other scheduled time points shifted from actual dates to TBD.

This change to the last remaining milestone is arguably the most important. For almost the entirety of the program’s existence, this has been major moment for sharing data—including updated annual and cumulative figures on lives saved, people receiving pre-exposure prophylaxis, and more.²

This latest development is baffling, alarming, and deeply, profoundly discouraging to anyone who has kept hope alive that the program will be telling the story of what’s happened this year, or sharing crucial data as the US government hastens to put together memoranda of understanding with governments around the world.³ Instead, we are flying blind.

As of August 8, the World AIDS Day milestone was still in the calendar. (That was the day this Substack started—and also the day that every other milestone flipped to TBD, as shown in the second image in this update.⁴) For a while after that, I refreshed the page a lot. Then I didn’t, until this week, which has found me trying to piece together the timeline and politics of forthcoming global health foreign aid memoranda of understanding. Which, you know, should be based on data. So the change happened at some point in the last 60-70 days.

World AIDS Day is a fairly big deal. Even as interest in this global issue has waned over the years, this is the one day that media usually pay attention to this ongoing global pandemic.. Every year, UNAIDS unfurls a thematic campaign.⁵ Countries reflect on progress and gaps, when communities have a chance to share collective grief, memories, priorities and pride in who we are and what we’ve done.

Everyone who does anything on World AIDS Day uses numbers. This is because HIV is an infectious disease that poses a global health risk and the way that you know whether what you are doing is making a difference or contributing to waste and abuse of taxpayer dollars is by looking at the numbers.

PEPFAR has always made World AIDS Day a festive, reflective occasion, playing to their Congressional champions and to other donors, sending a message about why this work was started and what it has achieved. And this always involves numbers. At a World AIDS Day event in 2018, Vice President Mike Pence stopped for applause after reeling off recent achievements—all verified, painstakingly cleaned numbers.⁶ Last year, President Biden issued a proclamation, displayed portions of the AIDS Quilt on the South Lawn for the first time in history. He used the updated numbers when he spoke to an assembled crowd of AIDS workers and their families—including me and my sons. For more on that - read to the end.

Changing the release date from December 1 to TBD begs the question when else would World AIDS Day data be published?

Alt text: A white-bearded person with pale skin, sunglasses, a red stocking cap with a pom-pom, and a red and white striped short sleeved shirt holding a coconut with a cocktail straw in a drink. There are large tropical leaves behind the figure, who is Santa Claus. The caption says: Christmas in July. For some people, Christmas is not a thing. For people for whom Christmas is a thing, it is not in July. It’s on December 25. World AIDS Day is on December 1.

Dead seriously, though:

Will GHSD do something public, specific and immediate to fill the data vacuum that has persisted for an entire year’s worth of programming?

We—meaning people living with and at risk of HIV and allies like myself—know many people with ART have been lost from treatment. We know PrEP initiations are down. We know the people PEPFAR paid to support data collection aren’t in their roles in many places anymore, and there’s a huge backlog. You can’t hide that. We can handle the complexity of messy, incomplete numbers.

The continued lack of data sharing and this latest walk-back from a schedule to hit the most important data-driven day of the year in this of all years is heartbreaking, maddening and terrifying. It undermines the credibility of the America First Global Health Strategy planning process and it heightens the risk of anti-science meddling in these plans that I raised in my most recent post.⁷

Alt text: Three screenshots of the same webpage taken from top on October 13, August 7 and August 8. There is white-on-black text at the top left that says “PEPFAR Panorama Spotlight,” and black-on-white text that says “Data Public Calendar.” In the bottom two screenshots there is some top-notch, not at all amateurish, red crayon circling of the time and date stamps. In the top shot, every date says TBD. In the middle shot, every date is filled in. In the bottom shot—the screen as it appeared on August 8—everything is TBD except World AIDS Day. The WayBack Machine has not crawled the site in the past several months.

Before I sign off, I want to say thank you to President Joseph R. Biden and First Lady Jill Biden, for a gift they gave some folks who work on HIV/AIDS on World AIDS Day Last year.

Last year on December 1, HIV/AIDS workers from across the country working on domestic and international HIV gathered on the South Lawn of the White House. There were Black gay men, white gay men, gender nonconforming people; there were people living with HIV; Ryan White’s mother; scientists and epidemiologists; Tony Fauci, trim in his wool overcoat, and his security detail. There was me and my two sons who wore new dress slacks and shiny, uncomfortable shoes we bought from a big box store on the way there. There were friendly people handing out tiny AIDS ribbons and cups of hot cider, and a dolorous brass band that played while President Joe and Jill walked out holding hands, picking a path through the quilt and gazing at it as they made their way to the podium. And then the President addressed all of us and he said a lot of things including many updated, verified, cleaned numbers released under embargo until that day, World AIDS Day. He also said to all of us: “You matter. What you did matters.”

A photo of my sons from that day, in front of the White House with its Red Ribbon, has been my phone background since that day.

Alt text: A close up of two pale-skinned hands - one is holding a little business card with a picture of the White House and a tiny red ribbon pin, and bracing a white hot-liquid take-out cup against the figure’s blue blazer and light blue button down shirt. That is one of my sons. The white cup has hot cider in it. It got cold pretty fast. The other hand has one thumb up and two fingers pointing towards the cup. That is his version of what Jalen Brunson does after hitting a three pointer. It’s the highest possible praise. Go Knicks.

I don’t know if the band was as sad as I remember it, but I do know we were all sad. A beloved mentor and fighter Cornelius Baker had recently died. And we knew something—a Democratic administration—was ending. Today, when I think of the deep sadness I felt then, I wonder if my grief will ever be that shallow again, and I am grateful beyond words that I have that day in the bank. That my sons and colleagues and fellow fighters for health justice saw and heard a US President give the latest HIV numbers, released on schedule, and say, “You matter.”

Alt text: A sandy-blonde haired, pale-skinned man with a beard, tortoiseshell sunglasses, a gray scarf, blue sweater and an overcoat, and a pale-skinned curly-haired woman with sunglasses perched on top of her head wearing a black overcoat stand in front of the White House. It has a giant red AIDS ribbon on it. Almost the height of the facade. There is a green lawn behind them with large squares of quilt laid out, and strips of green in between. That’s me and my dear friend, former colleague, and this Substack’s first guest DJ, Mitchell Warren, Executive Director of AVAC. We are at the White House World AIDS Day event on December 1, 2024. We are smiling and we have our arms around each other’s shoulders. We have no idea what is coming. On February 10 2025, AVAC sued President Trump, the State Department, the US Agency for International Development and other, seeking emergency relief from the Executive Order that inhumanely froze all funding for foreign assistance.

You matter. What you did matters.

What you do matters.

1. https://data.pepfar.gov/calendar

2. World AIDS Day isn’t a major day in everyone’s calendar. If you’re one of those folks (thank you for being here, and hi mom!) this change is like Hallmark changing the date for release of Mother’s Day Cards from early May to TBD.

3. https://emilysbass.substack.com/p/pepfar-programs-face-information

4. https://emilysbass.substack.com/p/is-pepfars-data-going-dark

5. https://www.unaids.org/en/World_AIDS_Day

6. https://www.presidency.ucsb.edu/documents/remarks-the-vice-president-world-aids-day-event

7. https://emilysbass.substack.com/p/rfk-jr-and-hhs-to-control-most-global