Recent years have seen major inroads in the fight against HIV, including through the development of new preventative medicines that have become more affordable and accessible thanks in part to government interventions like the Affordable Care Act’s federal health insurance coverage and cost-sharing mandates.
Over the past four years under the Biden-Harris administration and U.S. Health and Human Services Secretary Xavier Becerra, health policy has focused to a significant extent on health equity, including for LGB and trans or gender diverse populations.
President-elect Donald Trump’s record from his first administration, plans laid out in the Heritage Foundation’s Project 2025 governing blueprint, and the policies championed by voices closest to him offer a roadmap for how the federal government is likely to approach public health issues important for the LGBTQ community in the second term.
Speaking about these matters with the Washington Blade earlier this month were two experts from the Human Rights Campaign, Torrian Baskerville, who serves as director of HIV and health equity, and Matthew Rose, the organization’s senior public policy advocate.
Appointments
The discussion happened before Trump’s nomination of Robert F. Kennedy Jr. to serve as HHS secretary, Dave Weldon for director of the Centers for Disease Control and Prevention, and Marty Makary to lead the Food and Drug Administration.
“HHS will be very important for us,” Rose said. “Who they put at the Office of Civil Rights at HHS will be incredibly important for us. The assistant secretary for health has, under Democratic administrations, and in Republican administrations, been a champion for us, sometimes” like Trump 1.0’s Assistant Secretary for Health Admiral Brett Giroir, who “did what he could for us.”
He continued, “This is the first time that CDC requires, will require, a Senate-confirmed person, and so that is going to be something to watch. I’m not as concerned about NIH always, unless they find someone really, really crazy to take over. FDA is a worry because it could change just how we view drugs and drug regulations and how those get approved.”
Rose added that he is “always watching OMB, because the people who make the budget decide how money gets spent” and it remains unclear whether the new administration will see a new director of the Office of National AIDS Policy.
Concerns
“I know a lot of people, particularly LGBTQ folks, who are like, ‘oh, shit. We are in trouble,’” Baskerville told the Blade. “And what does that mean for my care? What does that mean for” people who are saying, “I’m a Black trans woman who’s living with HIV — these proposals that folks are talking about, particularly out of Project 2025 and Trump, and the rhetoric — how does that impact me?”
“While we are desiring and hoping for the best,” Baskerville said, “the reality is that things that we have seen, at least the rhetoric, hasn’t been hopeful. And so we’re just hoping that there are guardrails in place that help to maintain and control as best as possible some of the things that may be going on.”
He added, “As a community, we’re really just thinking like it’s going to be a shit show, but what does that mean for us? How do we persevere through and what do we need to do to hold him accountable, hold his administration accountable, and continue the fight of advocacy?”
Baskerville said his biggest concern is “safety” and the ways in which the “Trump administration is going to challenge folks’ ability to feel safe” whether based on their immigration status or gender or sexual identity.
“Trump, in his rhetoric, has emboldened folks with different ideals and opinions to really lean into some of the hatred and the bigotry and the things that challenge and impose difficulties on folks’ safety,” he said. “If folks aren’t feeling safe at home, if they’re not feeling safe in their communities, they’re not going to access any of the health care, or any of the other things, and feel like they’re empowered to do that.”
In the case Braidwood v. Becerra, the Biden-Harris administration has defended the principle that the U.S. Preventive Services Task Force can make coverage determinations about preventatives like pre-exposure prophylaxis (PrEP), which is taken to reduce the risk of HIV transmission.
Under the next Trump administration, “We’re actually very concerned about the government reversing its role,” Rose said, which could jeopardize coverage mandates for contraceptives, too. “Changing the position on Braidwood is pretty quick and easy for them to do. They can pull out of that pretty fast.”
“It’s a whole sweep,” he said. “Like, the argument is that the U.S. Preventive Services Task Force is not an assigned body and voted on and thus they should not have prescribing authority to set standards, and that whole piece has been sent back to the district court” from the U.S. Court of Appeals for the Fifth Circuit.
“Nobody wants to pay for preventative medicine, is what they are trying to say,” Rose explained. “And that the government doesn’t have a right to tell us what the preventive medicine is. And then they asked [for the court to strike down] the whole ACA, which was just fantastical. But it’s still an active case, and we don’t know what’s going to happen if the U.S. government switches its position on it. I imagine that state attorneys general, who have been tracking the case, would step in, but we’ll have to see what their capacity looks like.”
“Our argument has always been that if you want to have your religion, that’s fine, but you don’t get to use government dollars to discriminate,” Rose said. “And if you want to have the government plan, and you want a government support, you can’t discriminate against people. If you wanted to set up your own private system, that’s on you, but you don’t get to take public dollars and do that with them.”
With respect to PrEP as well as other public health matters, Rose noted some other reasons for concern — including “some things in Project 2025” that indicate there will be “greater deference to all things like religious exemptions and conscience clauses and whatnot,” though he said it is unclear how far the next administration would be able to take this.
Trump 1.0
“Some of their biggest health people aren’t all anti-PrEP,” Rose said. “The HIV community has continuously reminded Republicans that Donald Trump did create the Ending the HIV Epidemic initiative that has helped move the needle. And so there is some promise there. They aren’t all full-on, like, anti-PrEP all the time, but they are wary of it.”
He added that while officials in Trump 1.0 were not “the biggest fans of the CDC,” they were “fighting so many other battles” that they were unable to substantially reorient the public health agency.
“They didn’t go back to some of the regressive years of, like, no promo homo, where you could not talk about gay people or anything that made gay life seem like a good thing,” Rose said.
“There were more Bush people back then,” he said, a lot of whom “still have the legacy of doing PEPFAR with the president,” like Giroir, who “worked on pediatric AIDS as part of his career, and so he was willing to push for some things that we wouldn’t have seen otherwise.”
Rose added that “that’s how he” and longtime National Institute of Allergy and Infectious Diseases Director Anthony Fauci “got together and worked to create, with the Trump people, the Ending the HIV Epidemic initiative.”
“At the same time, those same people who said, ‘wow, these HIV numbers are really bad and we should do something about it’ we’re like, ‘but we hate all these LGBTQ people and their health, and so we’re not going to have any non-discrimination [rules], and we don’t care if we kick them off their health care, and we don’t care if they’re invisible in society,” Rose said.
This is a problem, he said because “given where the epidemic has always been in the community, it’s hard to end the HIV epidemic without talking about LGBTQ people and the resources that we use in the community, and the lives that we live, and the lives that we have.”
“And so, it ends up being this weird place of like, you have these religious, fundamentalist nationalists who want one thing; you have these quasi-public health people who are like, ‘oh, the private sector can help;’ and you have these government people who are like, ‘we’re not spending any new money,’” Rose said.
“I will say that, despite his saying he was supportive, every budget produced by [Trump] when he was in office decimated funding for the CDC and HRSA and HHS in all of the HIV line items,” Rose said. “So, he didn’t wholesale eliminate anything, but he shaved those things down to bare bones.”
Timing
Asked whether the FDA under Trump would be likely to consider rolling back the expanded guidelines on blood donation for men who have sex with men, Rose said no.
“One, it’s very small potatoes for them,” he said. Plus, “because it was done through formal rule making, it would take a lot of effort to roll it back” and the guidelines — while they are substantially better than the categorical ban on blood donation by gay and bisexual men that persisted for decades — are not exactly perfect.
At HRC, Rose said, “we would say [the policy is] still not in a perfect place, because it still requires a level of deferment that is not the same for heterosexuals who engage in the same sexual activity, where data could just tell you and you’re going to test the blood anyway.”
More broadly, Rose said, “I think about what levers can they pull when. Like, dismantling the Affordable Care Act is going to take a while. He has ‘concepts of a plan,’ but until he gets rid of concepts and actually has a plan, no one’s buying that.”
The proposal for “block granting Medicaid” is also unlikely, Rose said. “Medicaid is one of the largest payers of HIV services, both for treatment and prevention, because there’s just a lot of low-income people on Medicaid and the poverty tracks are similar to the HIV tracks. So changes to the Medicaid program, I worry about like things like work requirements, which they’ll try again. That will happen faster than block granting.”
Timing-wise, Rose said, “For health, there’s just a lot of regulation to get through” so, “we’ll have less acute pain than some of the immigration stuff” where the administration will “hit the ground running on day one.”
At the same time, he added, for people living with HIV who are in mixed-status families, or who are undocumented, there will be a “chilling effect” that “will happen really soon, or could happen really soon,” which is “something I worry about the most, right away.”
PrEP
Changes to America’s healthcare governance come as the outgoing administration has pushed to expand access to preventative medicine for reducing the risk of HIV transmission, which follow major advancements in drug discovery.
“There is a new version that Gilead Sciences is putting up, lenacapavir,” Rose said, which is administered twice per year with a subcutaneous self-injector. The drug ” will have a different name when it comes to market, just like cabotegravir became Apretude,” he said.
“The coverage determination that the administration just released last month covers all PrEP products,” Rose said. “It happens to cover all three of them right now. Technically, it’s just a clarification of the existing rule already.”
He continued, “The ACA already required that you provide any Grade-A rated, preventative service at a zero cost sharing. And this clarification just says, ‘Hey, you were supposed to be doing this. We heard some of you aren’t doing this. If you want to sell in the marketplace, you have to do this.’ We saw the same [thing] with contraceptives also had to have this clarification.”
PrEP enjoys the rare distinction of being a drug regimen that is covered along with preventative services like mammograms, Rose added.
“In the early days of PrEP, we made the case to insurance companies that they should cover it,” he said, because “from a financial standpoint, at the time it was $16,000 a year for Truvada, which now has gone down with the generic. It’s around $18,000 for Descovy, but that is still cheaper than the overall cost of [HIV] treatment a year, which is, you’re looking at $62,000 plus additional medical expenses and costs.”
“Without guidance from the government, it was kind of a free range and the insurance companies said, ‘well, we’re going to put in prior authorizations to cost-control this,’” Rose added.
Baskerville detailed how HRC will continue to serve populations impacted by HIV.
“One of our biggest initiatives around wellness and action is our HIV self-testing kit program, understanding that there is a group of communities who will not go into a brick and mortar house and get tested,” he said. “And so providing them with another option” is important, and so on this initiative “we partner with seven community-based organizations across the U.S. mainland, and Puerto Rico, to distribute testing kits throughout the country.”
“In that partnership we have also worked with CVS Health,” Baskerville added. “What’s different with our program than other self-testing kit programs is that all of our partners also work to do a follow-up, so a navigation piece, once they distribute a testing kit, following up with them to see one, have they taken the test? If they have not taken the test, figuring out what barriers are in place, to get them to take the test and addressing those barriers. And then if they have taken the test, figuring out what their result was, and then connecting them to either care, if it was a reactive test, or connecting them to PrEP services if it was non-reactive.”
Baskerville continued, “We also have our leadership development program where we work with different populations over a course of six months to educate them around health equity, HIV, to then empower them to go into their communities, to help them be spokespeople and be advocates for HIV and help their community get the services that they need. This year, we particularly work with Black, sexually minoritized men living with HIV at the intersection of mental health, understanding that post-coming out of COVID, there have been a lot of issues with mental health things and depression and anxiety among populations.”
Additionally, “we have our public education sexual health platform, which is our My Body My Health” portal, Baskerville said, “where we provide all sex-positive, body-positive sexual health education as well as resources.”
“We’re currently developing what we call an HIV service provider index, and that is to assess service providers and their quality of service provision as it relates to providing HIV services to individuals, particularly Black and Latin LGBTQ community folks,” he said. “And so we’re utilizing that because we hear stories all the time around folks going to their providers and being denied PrEP or being told they can only get one particular version of PrEP when they want something different. It should be completed and developed by the end of February 2025, with implementation expected to happen kind around May – June.”
“We are constantly working with our federal partners to ensure that community’s perspective and the voice of community is is a part of the conversations when they’re thinking through policies and procedures,” Baskerville said.
Source: Washington Blade: LGBTQ News, Politics, LGBTQ Rights, Gay News – www.washingtonblade.com
