Many people living with HIV and their allies nationwide are deeply fearful of how a returning, more empowered Trump administration—with a Republican-led Congress and a conservative Supreme Court on its side—will tamper with and possibly eliminate programs that we all rely on to survive as well as to fight the epidemic.

These programs include Medicaid, the Affordable Care Act (ACA, or Obamacare) and the Ryan White CARE Act as well as prevention funding from the Centers for Disease Control and Prevention (CDC), the domestic Ending the HIV Epidemic (EHE) initiative and the longtime highly successful President’s Emergency Program for AIDS Relief (PEPFAR), which has help AIDS mortalities worldwide plummet. 

In other words, these times call for urgency, not sentimentality. POZ reached out to a brain trust of respected leaders, those living with HIV as well as longtime allies, and asked them for guidance as we move into 2025.

Ernest Hopkins, longtime senior strategist and adviser at San Francisco AIDS Foundation 

We don’t know what’s going to happen, but we know what the incoming administration has said it would like to do, which is cut domestic programs across the board. In the first Trump administration, programs like Housing Opportunities for Persons Living with AIDS (HOPWA), the Minority AIDS Initiative (MAI) and others that focused on diversity, equity, inclusion (DEI) were zeroed out on the House of Representatives side, only to be restored in the compromise with the Senate. 

But this time we have Republican rule across the board—White House, Senate and House—so many of the things we’ve seen in the past are likely to be brought up again. I would say it’s one of the most dangerous times for federal HIV programs in the last 20 years. I don’t think we’ve ever seen a time when the headwinds were so strongly against not just HIV but other conditions that many people living with HIV also deal with, such as substance use, mental health and being low-income. 

I would say that the most vulnerable program serving people living with HIV and AIDS, and millions of other Americans, is Medicaid. We’ve done a lot of work to expand Medicaid access in the majority of states, and that has been a target for Republican leadership for a while now. They want to claw back those expansions and do things that were proposed in the first Trump administration, such as giving the states block grants for Medicaid [a fixed sum that states cannot exceed, regardless of need] and creating per-person caps for service access. Any of that would be disastrous for people living with HIV. 

Then if they follow through with cutting 8% to 10% of all Health and Human Services (HHS) programs, that would mean that level of a cut for ADAP [the AIDS Drug Assistance Program, the payer of last resort for U.S. HIV treatment and care], and the cascade effect of that cut would be significant, especially with state budgets unable to backfill it.

The Affordable Care Act, which they nearly killed in 2017 but were blocked by one vote, from the late Senator John McCain, is also a target again, although I think they will go for Medicaid first. The thing we have to worry about is that they can use the budget reconciliation process to make all sorts of cuts, and that doesn’t need a supermajority—it just needs a simple majority. 

So we have to be diligent about making sure we advocate for the preservation of programs. If you’re a person with HIV who’s worried about this stuff, reach out to your local AIDS service organization and tell them you want to be part of whatever state- or federal-level lobbying they are participating in. You can also join national networks like the U.S. Caucus of People Living with HIV and, if you are a woman living with HIV, the Positive Women’s Network (PWN-USA) .

Marnina Miller, co–executive director, Positive Women’s Network–USA

We folks with HIV have faced difficult times before, and we’ve always found a way to fight back and thrive through collective action. Having said that, I know a lot of folks in our community are scared right now. But I’m cautiously optimistic because we’ve always been resilient. We’ve always found ways to fight back, organize, show up and take care of one another.

Difficult times make us create spaces to check up on each other, which makes us organize in real time and get ready for what’s to come, such as meeting with legislators. For the incumbents whom we voted for and kept them in office, we need to congratulate them on their reelection but also remind them: “I’m a person living with HIV in your district, someone who voted for you, and there are real implications here for me.”

PWN is currently building coalitions with groups like Advocates for Youth and the National AIDS Housing Coalition. We have partners who can offer hormone replacement therapy to trans folks if they need it. Right now, in Texas, where I live, they’re trying to reintroduce a transgender bathroom ban bill to the state legislature as well as bring in a “Don’t Say Gay” bill and a ban on trans people correcting their IDs, like driver’s licenses. So we plan to fight all that with PWN’s Texas Strike Force, a coalition spearheaded by the Greater Houston chapter of PWN. And that group is open to men as well. When these harmful bills come up, we’ll flood legislators. 

Meanwhile, anyone who identifies as a woman living with HIV can join PWN here. You’ll start getting our emails, which will include opportunities to join the fight.

But I’d also say it’s OK right now for people to grieve the election results, feel their feelings and engage in self-care right now, because these next couple of years are going to be rough.

Reverend Carmarion D. Anderson-Harvey, Alabama State Director, Human Rights Campaign (HRC) 

 

The potential threats to critical programs that aid people living with HIV and AIDS are deeply concerning. Transgender people living with HIV or those who are on pre-exposure prophylaxis (PrEP) stand to be especially impacted by these threats, given that they are disproportionately unable to afford lifesaving drugs out-of-pocket. But there are steps folks can take to prepare.

If possible, we encourage you to ask for 90-day supplies of medication, ensure all your documents are updated and talk to your health care provider about your concerns and any protections they can offer under existing law. Build support networks with friends and community members—our resilience has carried us through dark times before.

It’s never easy, but our history shows that we are a community that survives, fights for what we deserve and continues to move forward, even in the face of the toughest challenges. It’s why our organization will remain steadfast in providing resources and updates relating to HIV and health equity to the communities we serve so that they know how to best protect themselves.

Jesse Milan Jr., president and CEO of AIDSWatch organizer AIDS United

We should be vigilant and aware of all that could come, but we should also be aware of the power that we’ve always had, which we can still deliver at this time. The HIV community has been a force for change for more than 40 years, and that force will be needed now more than ever. The programs and policies that we’ve helped win have helped us not only stay alive but thrive, so we need to remember the power we can unleash to persuade our decision-makers in Washington, DC, and in our states to continue their support for us. 

I really urge folks living with HIV to try to come to AIDSWatch 2025 in DC on March 16 to 18, the annual event where people with HIV and AIDS and their advocates are trained to speak to their reps on Capitol Hill and then go there in teams to share their personal stories that show how crucial Ryan White, Medicaid, the ACA, PEPFAR, the CDC and the NIH [National Institutes of Health] funding are to our communities. The window to apply for scholarships has closed, so perhaps reach out to your local AIDS services organization to see if they have funding to send or bring you.

But even if you can’t come to DC, we’ll be mounting AIDSWatch At Home in several states so we can tell our stories directly to state legislators, who decide on crucial aspects of our lives, such as LGBTQ-related bills, HIV criminalization laws and state-level funding for HIV, STIs [sexually transmitted infections] and harm reduction programs, like needle exchange.

Carl Schmid, executive director, HIV+Hepatitis Policy Institute 

I’m worried. I don’t have the answers at this point. I don’t think they’re going to kill Medicaid or the ACA, but they may seriously cut or change it, such as giving states capped block grants for Medicaid, which would end guaranteed benefits, which a lot of people living with HIV rely on. 

I’m also worried about cuts to the CDC, the NIH and Ryan White. The Trump administration will propose these things, and it’s up to Congress to decide them, so we’re going to have to take our voice and our message to Capitol Hill. Reach out via email, phone or visit your congressmembers offices to tell them why HIV treatment and prevention is so important to you. And definitely reach out to your local AIDS services organization or a similar group to see if you can plug into their federal- and state-level advocacy efforts. 

I’m expecting the worst—and we just have to work together for the better.

Dafina Ward, executive director, Southern AIDS Coalition

These times are scary—not just because of what we fear losing in terms of HIV prevention, treatment and services but from an identity point of view. So many of the folks living with HIV whom we care for are from communities, such as Black, transgender and immigrant, that are impacted by a range of disparities and challenges.

So yes, there are a lot of things to be afraid of—but also a lot of opportunity for us to think about how we position ourselves to step into our power in this moment. As a community, we have a responsibility to support one another to find that out in the face of the uncertainty that’s coming our way.

I’m very concerned about access to health care for Southerners. Most of the states that still lack Medicaid expansion are here in the South, so possible cuts or changes to the ACA are of great concern. And I’m also concerned about continuing to see a mass exodus of health providers from the South, whether that’s infectious disease doctors or OB-GYNs [who’ve been chilled by abortion bans throughout the South]. We already have a lack of health providers in many counties in the South.

But also, EHE started under the first Trump administration, so perhaps there’s an opportunity for the incoming administration to serve again as a catalyst on that, which would be a beautiful win. 

We have to fight to sustain what we already have, like access to treatment and care via the Ryan White CARE Act, and safe housing—we don’t want to lose momentum. And this is a moment when we truly have to de-silo our fight so we in the HIV community are working with other groups with common cause. We have to be aligned in our priorities. 

I also really encourage folks to look closely at what’s happening in their local communities. It’s so important right now that we know what our local elected officials stand for and take this opportunity to educate them on the impact of HIV. In the South, we have Republican supermajorities in all our states, but I’ve come to understand the power of engaging with people who may not share the same political views as I do—but who still ended up being important allies.

For example, we recently did a Policymaker Academy for Southern lawmakers and had several Republican Southern state lawmakers join us. One of them sat in and learned about HIV criminalization, and at the end, he said, “I had no idea that my state criminalized people for having an illness—and I sit on the Medical Affairs Committee. We’re going to have to talk about that.”

I’m not going to name him, but he was there because an HIV advocate had cultivated a relationship with him where he felt comfortable coming to our event. And there he learned that there was a law on the books that was harmful and discriminatory and not based in science, causing harm to people living with HIV, and that he could do something about it.

So I really urge people to find out who their federal, state and local reps are, and if you hear something concerning about an issue of importance to you, pick up the phone and call them. Say “I’m one of your constituents and I’m concerned about this.” You’d be amazed what a difference it makes when they get a lot of phone calls from people who are actually in their districts.

Call folks, show up for visits and community forums. If you’re not extroverted, you can be part of a coalition where you can be informed and be a part of the work. As for the Southern AIDS Coalition, people in Southern states can sign up on our website and also follow us on social media.

So we’re not going to cower in a corner but let’s be strategic. We have to be laser-focused on where we can make a difference. People are afraid of something new every day at this point, so let’s harness our power to focus on what’s most critical to us.

Jeff Berry, executive director and cofounder, The Reunion Project (living with HIV)

If someone told me they were scared, I’d say that I’m scared too—we’re all scared. But as someone who was there for the early days of the epidemic, I can say that we’ve been here before in some ways. It’s important to keep that perspective and look at the long game.

Meanwhile, there are things you can do to get through this challenging time. You can limit your media and social media intake so that you’re staying on top of things but not drowning in it. I read daily Letters from an American by Boston College history professor Heather Cox Richardson, which puts the daily news in a historical context. 

Besides that, connect with other people. Check in on friends, because you never know what someone else is going through. That one phone call they get from you might make all the difference in the world. I also practice breathwork, mindfulness and meditation.

In terms of advocacy, this AIDSWatch coming up in DC in March is probably going to be the most important one ever, so try to go if you can. Locally, you can connect and maybe even volunteer at community-based nonprofits, such as meal delivery programs. Things like that likely are going to be more important amid our threats to the federal social safety net. 

As for The Reunion Project, which is a national network of HIV longtime survivors with an array of in-person and virtual events throughout the year, go to our website and sign up. During COVID, a lot of people who were scared started coming to us and realizing that we were a safe place to strategize and support one another through a difficult time, like the one we’re probably going into. But we’ve gotten through hard times before and we can get through them again.