Advocates meet to plan a response; how you can get involved

It was noon on the east coast on Tuesday January 28 when about 65 HIV advocates from across the country—Capitol Hill lobbyists, service providers from community nonprofit organizations and people with HIV—gathered on a Zoom call organized by the HIV prevention advocacy group PrEP4All. 

The call had originally been scheduled to discuss how to push back against $700 million in cuts to federal HIV programs proposed by Republicans in the U.S. House. The meeting agenda—and invitation list—was expanded after news broke that the Trump administration had sent out a memo putting a freeze on a stunning swath of federal funding programs, putting them on “pause” to see if they went against the administration's goal of rolling back diversity, equity and inclusion (DEI) initiatives, services for transgender people and green-economy measures. (Update: Later on Tuesday, a federal judge blocked until next Monday, Feb. 3, the funding freeze—news that came as temporary relief to advocates.)

“In light of a lot of fast-moving information about what these freezes mean for our community, we decided to invite the broader HIV community to have a session where we could compare experiences, share potential impacts and discuss how best to engage with our champions to elevate or concerns,” PrEP4All executive director Jeremiah Johnson told POSITIVELY AWARE. He wouldn’t go into detail of the group's evolving plans but said that it would likely focus more on members of Congress than on the administration itself because, until very recently, HIV/AIDS programs have enjoyed bipartisan support for decades.

On the call, advocates shared notes on the rapidly unfolding crisis and began mapping out a plan to try to retain funding for an array of programs that support people living with HIV in the U.S., from Medicaid and the Ryan White CARE Act to CDC prevention efforts and the Ending the HIV Epidemic (EHE) initiative—which began under the first Trump administration.

Many advocates were still reeling from the news a few days earlier that the Trump administration had ordered a hard freeze on PEPFAR, the U.S. global AIDS program that is credited with saving an estimated 26 million lives around the world since it was started in 2003 under president George W. Bush. Today, PEPFAR provides lifesaving medications to about 20 million people, including 500,000 children. Advocates were shocked to learn that the freeze ordered health clinics around the world to immediately stop distributing HIV medications that had been purchased with U.S. aid, even if the meds were on clinic shelves ready to be dispensed. Late Tuesday, U.S. secretary of state Marco Rubio issued a waiver, lifting the freeze on HIV drugs. However, it was not clear whether this also applied to the HIV prevention medications known as PrEP, or other related services.

On the call, Johnson continued, people were trying to make sense of incoming pieces of unclear and contradictory information. For example, in a follow-up communication, the Trump administration said that Medicaid was not among the frozen programs—even as reports came in from many states that their Medicaid portals were down. 

“People were sharing stories that organizations across the country are trying to go in [to their federal government funding portals] and draw down money for already awarded grants but are running into obstacles,” he said. “If this drags on even for just a couple of weeks, a lot of organizations aren’t going to be able to make payroll. And that applies to organizations in both red and blue states.”

Almost as soon as the Trump administration announced the funding freeze, 22 states and an array of organizations said they were filing lawsuits on the argument that the president does not have the power to simply freeze—or, as it’s known in Washington, “impound”—funding that has already been approved by Congress. [Those lawsuits triggered the temporary freeze from the federal judge.] “Our view right now suggests that this freeze will touch on every single major funded program, but we're going to have to see if that's true,” Johnson said. “What will the evaluation of each program look like? And is this even legal?"

Johnson urged that people living with HIV (and others) concerned about the freezing of any federal programs call their reps in D.C.—particularly if they are from districts with Republican members of Congress—to tell their offices what is at stake for them. (They can also reach out to their local HIV services organization to see if such groups are doing advocacy around this, and how to plug in if they want to.) 

Johnson also said that PrEP4All will be holding a weekly Zoom meeting for HIV stakeholders and that organizations (not individuals) who want to register for the calls should email Michael Chancley, PrEP4All's communications and mobilization manager, at michael@prep4all.org. Johnson said that users of PrEP, the HIV prevention regimen whose coverage will be contested before the Supreme Court later this year, could also join PrEP4All's PrEP Users Union to be part of an advocacy effort to preserve access to PrEP. (They can register here, Johnson said, and scroll to the bottom of the document to sign up.)

Fear and uncertainty among service providers

Among the many HIV service providers across the country who are deeply worried they will no longer receiving federal funding is AIDS Alabama, whose CEO and decades-long leader is Kathie Hiers. “This is terrifying for us because of the people we serve,” Hiers said. “We cover so much housing for people with HIV and for homeless people. Thank God our February rents are paid for them.” AIDS Alabama provides different kinds of housing, almost entirely through federal funding streams including the Ryan White program and Housing Opportunities or Persons with AIDS (HOPWA).

“But,” she continued, “I fear we might not have rents paid for March. If this thing drags on, landlords aren’t going to be understanding. We have some savings, but if we have to pay rents with it, we’ll be out of money in a couple of months. I’m trying very hard to keep my staff and board from panicking.”

The situation is moving so fast, Hiers said, that that she was waiting to join a national coalition like the one forming on the PrEP4All call. “Normally, we’re the first to jump on board, but it’s so tenuous right now that I want to talk to my board first to decide how to react.”

She said that the freeze, motivated by the Trump administration’s push to identify federal money being used for things it disapproves of such as DEI and transgender services and initiatives, was a kind of whiplash. "Up to now, we've been encouraged by HUD [the U.S. Department of Housing and Urban Development] to house vulnerable populations"—which can include Black people, LGBTQ+ people, transgender folk and people who use drugs—“but some of them are the very populations that this administration is now targeting."

The role of people with HIV networks

“We’re still trying to get a grip because things are happening every day,” said activist Venita Ray. Diagnosed with HIV in 2003, Ray is chair of the all-volunteer U.S. People Living with HIV Caucus and founded the group Black South Rising. As a Black woman living with HIV in Houston, “it feels like every part of my identity is being hit in ways that we've seen before, but not as bad as this.”

Ray noted that constituency groups like hers would simply be unable to respond to every attack from the Trump administration and/or Congress. “We can’t go after everything,” she said, “so how do we stay focused on what we can do within healthcare, getting our people trained and educated so that we can get involved in [congressional budget] appropriations?"

She said the USPLWHIV Caucus planned to work with the HIV Caucus, a group of members of Congress who focus on HIV-related issues and funding, and with the Public Policy Council of the D.C.-based advocacy group AIDS United. “We’ve got to not lose what we’ve gained, because our folks’ lives are at risk,” she said. 

Ray urged people with HIV to join USPLWHIV. She said that the organization is preparing to take part in AIDS United’s annual lobbying day on Capitol Hill, AIDSWatch, set for March 31–April 2.