In March, right before COVID-19 hit hard, the activist-initiated but Trump administration–approved plan to End the HIV Epidemic (EHE) in the U.S. was proceeding apace. At the time, targeted jurisdictions across the country were just starting to get their initial federal funding to start drafting their plans, and there was some concern about whether and how state and county health departments would truly engage people from the most affected communities (gay Black men, Black transgender women, rural injection-drug users, etc.) in their planning.
Nearly nine months later, even as a new presidential administration promises to be more attuned to drivers of the epidemic, such as housing and health care disparities, it also appears that COVID has sucked a lot of time and energy away from the public health community, slowing down the EHE process in at least some places. As the national Act Now: End AIDS (ANEA) coalition recently reported in its year-end summary, a summer survey found that more than 90% of staff at health departments in EHE jurisdictions were redeployed to COVID matters.
But despite all that, advocates say that jurisdictions do seem to be moving forward, however unevenly, with the community-engagement work needed to finalize their plans, which are due to the Centers for Disease Control and Prevention (CDC) by Dec. 31.
“In many ways, EHE is still in its infancy,” says Jeremiah Johnson, HIV project director at Treatment Action Group, one of the national groups in the ANEA coalition. “We’ve gotten mixed reports on how well health departments are engaging communities, and we have many concerns that the interruptions due to COVID have really undercut that necessary engagement.”
In good news, he notes, the Biden administration has committed to an EHE endpoint of 2025—more ambitious than the Trump administration’s 2030 endpoint. And in other good news, the Senate just appropriated an additional $210 million for the EHE effort, spread out over preexisting HIV funding streams such as the Ryan White HIV/AIDS Program, the CDC, and the National Institutes of Health. “But Congress has to pass that, so it’s not final.”
That, plus the dynamics of a new presidential administration, mean that “we’re at a turning point with EHE,” says Johnson. “It’s been an initiative with minimal [federally] coordinated implementation up to this point. Moving forward, we might be able to have something that looks like a more comprehensive initiative, but that’s going to depend on the degree to which the Biden administration continues to carry HIV-related work forward” while the public health challenges of COVID are dominating headlines.
Some Places Moving Faster Than Others
Meanwhile, some jurisdictions seem to be chugging along in terms of their planning, according to Ace Robinson, director of the NMAC Training Center to End the HIV Epidemic in America. “Baton Rouge, New Orleans, and Baltimore have all done a stellar job at making sure the community was engaged through the entire process, so they’re being highlighted as examples,” he says.
Advocates also pointed to Boston as a jurisdiction scoring high marks for community engagement—a view held by Carl Sciortino, the executive vice president for external relations at Boston’s LGBTQ-serving Fenway Health and a member of two state EHE advisory groups.
“We’ve had a really positive experience here the past year with EHE,” he says, adding that both state and Boston health departments “pulled together a pretty broad group of stakeholders” and kept on convening them regularly into the COVID era via Zoom meetings. In that group, says Sciortino, “There’s well over 100 people with lived experience, either having HIV or being in a high-risk community group” such as Black and Latinx gay men and transgender women, he says—and many of them are not staffers at related agencies or nonprofits, as is often the case with such advisory panels.
In Nashville, Brady Dale Morris, a member of the mayor’s EHE council, says that COVID had not entirely halted the council’s 2020 work, which included approving its bylaws, electing cochairs, and adopting a nominating and recruitment plan in order to onboard a diverse group of locals living with HIV. Implementation of the actual EHE plan began on World AIDS Day (Dec. 1) with the release of a series of videos on the importance of knowing one’s HIV status.
“We’ll use those as a jumping-off point to have more community conversations around U=U [undetectable equals untransmittable], PrEP [pre-exposure prophylaxis], and condoms,” he says. A high priority at the moment, he adds, is continuing to get people HIV-tested during COVID, “because they’re not coming into the agencies like they used to.” Other priorities, he says, include modernizing Tennessee’s HIV criminalization laws and getting comprehensive sex ed throughout the state public schools.
Meanwhile, in Alabama, state health department officials “are finally listening to the people most affected,” says Tony Christon-Walker, director of prevention and community partnerships at AIDS Alabama. (He was recently made a cochair of the state’s EHE planning committee.) Still, he says, “They’re taking their time getting input around the state from people who work in opioid overdose prevention and needle exchange, where you can get a lot of rich, in-depth information.”
If outreach to communities is too narrow, he says, “then you get a few people around the table who come up with some ideas that don’t work—and then they want to blame ‘the community’ for it.” (The Alabama Department of Public Health did not reply to requests for comment.)
In Houston, Crystal Townsend, the coordinator of the coalition End HIV Houston, says that “COVID has really shaken up our momentum” since a February listening session that established some core values for the plan, such as transparency and racial justice.
“The state and county health departments have been super swamped with the pandemic response, with a lot of HIV staff deployed to do COVID work, so we haven’t had a chance to do a lot since March,” she says. “There hasn’t been much community engagement, although the Houston Health Department is planning some virtual listening sessions for December.”
Beau Mitts, chief of the Houston Health Department’s bureau of HIV/STD and viral hepatitis prevention, affirms that. “We’re looking forward to hitting the ground running with some kind of virtual community engagement in 2021,” he says, “and we’re looking at applications that have come in for positions related to the [EHE] plan, so we should have some new staff in place after the new year.”
Some advocates also said they’d heard that Missouri’s state health department was not doing as much as it could to pull in community feedback. In that state, Devin Hursey, 29, of Kansas City, who is an HIV peer educator at Truman Medical Center and a steering committee member of the U.S. PLHIV Caucus, agreed.
At a virtual summer training, says Hursey, state health officials presented on what they had in store for EHE in Missouri. “I was impressed that they were really trying to respond to the moment by mentioning criminal justice reform and prioritizing the needs of Black gay men,” he says. “So the intention is there, and they’re keeping the community informed. But I don’t feel like they’re really asking us for our innovation and participation. They need to work more with community groups representing the populations they want to serve.”
Those groups, says Hursey, include the Black gay men’s group BlaqOut (of which he is a board member), the sex workers’ group MoHo Justice Coalition, and the Missouri HIV Justice Coalition, which is focused on repealing or modernizing the state’s HIV criminalization laws, which prosecute people who do not disclose their positive HIV status to sex partners, even if their HIV is undetectable on medication, or if a condom is used.
In reply, the Missouri Department of Health and Senior Services sent TheBody a two-page document outlining its EHE plans for 2021, which include not only individual presentations to the groups mentioned above (and many more), but also the development of a website where anyone could review the plan and add comments, as well as plans to disseminate the EHE blueprint over social media, including hookup apps. The document acknowledges both the necessity and challenges of including in the plan feedback from people living with HIV from diverse communities who are not already linked to a nonprofit or service agency: “Efforts will need to be undertaken,” it reads, “to address barriers that may prevent persons living with HIV from participating.”
And speaking of criminalization: Many advocates nationwide are unhappy that one of the key funding pillars of the EHE plan, at least as written by people in the Trump administration, is a call for greater use of molecular HIV surveillance. The process involves using medical records of people’s particular HIV genetic structure to try to identify transmission clusters in a certain area or social network, then using that info to reach out to people in that network in order to disrupt further transmission. Advocates worry that such data could be used as evidence in the many states that, like Missouri, still have laws criminalizing HIV-positive people for having sex without disclosing their status.
According to Hursey, health officials in Missouri have told community members that they will not use molecular HIV surveillance even though it’s a condition of the federal EHE plan. “That pillar ought to be taken out of the EHE plan” under the Biden administration, says Hursey, “and that’s something that the community needs to push for.”
More Guidance From the New Administration Needed
Many advocates agree that as long as COVID holds back people’s ability to have large events and gatherings, community engagement in EHE plans will be hobbled. “Let’s say we need to hit some big events, like football games or state fairs,” says Christon-Walker. “But we don’t know how long we’re gonna be in this bizarro COVID world. So we really have to rethink this day to day.”
NMAC’s Robinson points out another challenge: Coordinating EHE response among separate jurisdictions that are nonetheless adjacent and share fluid populations. “Like NYC and northern New Jersey, or greater Memphis, Tennessee, and northeastern Arkansas. Will they work in collaboration? We need a plan to patch all these jurisdictions together.”
And on top of that, guidance on plan formulation from the feds has been minimal save the “four pillars”—diagnose, treat, prevent, and respond—outlined so far.
“We’ve had nothing as comprehensive as the National HIV/AIDS Strategy [that existed under the Obama administration],” says Johnson. “We’re hoping that with Biden, we’ll get something a bit more in-depth. Right now, we have the pillars, we have the money allotted, and we have the local planning processes, but what’s connecting all of those pieces? What’s the grand scheme on a national level? It’s taken us a lot to get CDC guidance even on something as simple as how to do community engagement.”
So far, he says, the Biden team has committed to language that mostly feels lifted from the National HIV/AIDS Strategy of the Obama years. “But we’ve evolved past that. Quite frankly, we need more from them than the lackluster response we’ve had so far.”
Of course, the Biden team was given the official reins to governmental transition only on Nov. 23, as this was being written. So hopefully more will be revealed soon. New York City’s beloved maverick HIV czar Demetre Daskalakis, M.D., M.P.H., who has played a huge role in dramatically driving down HIV rates in the city over the past six years, was just named incoming head of HIV prevention at the CDC—an announcement that greatly cheered HIV advocates nationwide in terms of ongoing EHE progress.
And divisive Trump appointee Robert Redfield, M.D., will be leaving the top job at CDC, to be replaced by Rochelle Walensky, M.D., M.P.H., who may very likely make EHE a key part of her mission and empower staffers to give more granular guidance to localities, as Johnson and other advocates desire.
With all that in mind, where EHE might stand by this time next year—well into implementation, or still in the planning phases—is anyone’s guess. But everyone agrees that, however slowed and complicated by our new age of virtual-only meetings, the work must go on if EHE’s ambitious goal of basically ending new infections in the U.S. by 2025 is going to be achieved.
“Time is running away from us,” says Townsend. “COVID isn’t going anywhere anytime soon, so we have to find ways to keep going despite it.”