In Kansas City, Missouri, Brooke Davidoff, diagnosed with HIV in 2010, faces head-on what is happening with the federal government on her beloved Wednesday night Zoom with other women living with HIV from around the country. But she also admits she “numbs out” with TV shows about aliens or ancient history—and cannabis.
In Atlanta, Dazon Dixon Diallo, the HIV-negative founder of SisterLove, the longtime services group for largely Black women living with or affected by HIV, is on a daily Zoom with more than 1,000 people organized by the global-AIDS group Health GAP. But she's also determined to focus on other, happy things, like the impending release of her best friend's book.
Also in Atlanta, the well-known HIV blogger Mark S. King is following everything that's happening, but also "tending to my garden, watching Korean horror movies and cooking dinner with my husband." Near Los Angeles, Daniel G. Garza, diagnosed with HIV in 2000, has increased his therapy from every other week to weekly. In New York City, G., a queer and disabled academic and nonprofit worker living with HIV, has started taking Klonopin, an antianxiety drug, daily. And in North Carolina, Bonetta Spratley, diagnosed with HIV in 1990, starts her day with exercise and meditation.
"I ground myself with that before I start my work calls," she says, "because I know it's going to be a rough four years."
All around the country, in the few short weeks since President Trump reclaimed the White House and unleashed a fusillade of executive orders that to many looks like a warp-speed, possibly illegal attempt to tear down the entire infrastructure of federal government, people with HIV and their closest allies have—with millions of other Americans—watched events unfold with a mix of shock, dismay, outrage, fear, dread and confusion. Added to that is a profound sense of uncertainty about how exactly to respond, and what appears to be an almost daily struggle to balance paying attention to the crisis—and its implications for people with HIV both in the U.S. and abroad—with trying to live their lives and maintain a sense of sanity.
And this writer certainly counts himself among the people trying to walk that line. I've written about these issues for a living for decades now, so I can't ignore them, nor do I want to. And as someone living with HIV myself, I’m not exactly a disinterested journalist. In the past week, I've attended two rallies, not just as a journalist but as a citizen—one in D.C. to save the U.S. global-AIDS program PEPFAR, which the Trump administration abruptly shut down (and doesn't entirely appear to have restored it despite claims to the contrary) and one in New York City to demand that local hospitals continue to see and treat transgender kids despite Trump’s threats to cut off their funding if they do so.
And yet, I've tried to maintain pleasurable aspects of my life, from hitting the gym to going out dancing to getting together with friends. But there's a veil of depression, darkness and dread there that just doesn't go away, from virtually the moment I wake up to the moment I go to bed. Nothing feels entirely light and fun the way it did prior to the election, when I knew all too well that we were very possibly enjoying only a reprieve until Trump madness began again, this time with a turbocharged vengeance. I spend a lot of time thinking about how to make myself most useful in this moment, as a journalist, protester and giver of mutual aid for people most affected. I spend a lot of time thinking about how much worse things could get. And I find that, of those usual pleasures, only getting together with a friend or two is really comforting, in that we can process the situation and talk about what to do.
Tremendous fear and worry
In calls I made on Monday, Feb. 10, to about a dozen people living with HIV and their allies nationwide, nearly all of whom work in the nonprofit/human services sector and rely on some form of federal aid in healthcare—whether it's Medicaid, Medicare, Ryan White/ADAP or subsidized plans offered by the Affordable Care Act (ACA, known as “Obamacare”)—I found similar sentiments. One reaction is simply horror and dismay at the sheer cruelty of the administration's recent actions, from dismantling USAID and PEPFAR, which provide lifesaving meds and resources to millions worldwide, to putting a chaos-inducing freeze on federal funds that power a vast swath of domestic human services like food, healthcare and housing, to attacks on undocumented immigrants and transgender people that have left many feeling vulnerable and afraid.
The actions come on the eve of the March 31–April 2 AIDSWatch, the national group AIDS United's annual gathering of the HIV community in D.C., which features advocates visiting their reps on Capitol Hill to lobby for continued HIV/AIDS funding.
“I have no idea how to even converse with them,” Davidoff says of her GOP electeds from Missouri. “There’s no empathy in any of them, or they wouldn’t be revoking HIV meds for all of Africa.” (To be clear, freezing all aid from PEPFAR was a move issued by Trump’s secretary of state, Marco Rubio; PEPFAR has seen an erosion of its bipartisan support, with some Republican lawmakers in recent years calling for a reduction or end to the program.)
And domestically, Davidoff says, “I can’t figure out what Trump’s goal is other than to destroy the country.” On her weekly women-with-HIV Zoom, she says, “we talk about the quickness of this destruction—I don’t think we were expecting it so fast.”
She is echoed by Mitch Warren, the longtime head of AVAC (previously the AIDS Vaccine Advocacy Coalition), which advocates for global HIV prevention tools. “We knew a lot of this was coming because of Project 2025,” Warren says, referring to right-wing groups’ ambitious plan to remake the federal government in their interest that was published and widely discussed before last year’s election. “But everyone's been shocked by the speed, scale and inhumanity of how they’ve executed it in just three weeks.”
Says Dixon Diallo: “As a movement, we’ve been caught off our heels. We never expected this level of inhumanity.” She added, “As Black folks, as Black women, we’ve been telling you all for a long time that this is exactly who America is and has always been.”
Says G.: “Everyone in the nonprofit sector is just terrified,” largely because so much nonprofit work addresses issues of racial, gender and sexual equity and inclusion—areas of focus that the Trump 2.0 administration has all but decimated and criminalized, threatening a loss of federal funds for any entity that engages in those efforts.
Additionally, G.’s work-linked health plan sets their copay on their HIV medication, Odefsey, at $1,100 a month, which the Ryan White program’s AIDS Drug Assistance Program (ADAP) currently covers. “So I’m terrified of losing that," they say. “I have to have ADAP.”
To protest or not to protest—and when?
And yet despite dismay and fear, people I spoke with expressed extreme ambivalence about the role of protest, which was a highlight of the so-called "Resistance" during Trump's first term.
Protesters block an intersection in Washington, D.C.
A few, like Davidoff, are resolute. “I told all the Black women [on her weekly women-with-HIV call] that I’d use my privilege to do whatever I can to protect us” including protest, says Davidoff, who is white. But she also admits that the idea of protesting this time around is more daunting, given how harshly Trump dealt with Black Lives Matter protesters in 2020 and how his pardoning of violent January 6 insurrectionists, some of them part of well-organized right-wing militias, suggests that he would not be above deploying such extralegal forces against protesters.
"I don't know if people will be strong enough not to be afraid," she adds.
Another factor is age. Many longtime survivors of HIV, some of whom were part of 1980s–’90s fights to get rights and resources for people with HIV, are now in their sixties or older, and admit to not having the fighting spirit of young people. "I'm feeling every day of my nearly 65 years right now," says King. "I've been here before. I made it out of the 1980s alive. But I was also in my twenties then and perhaps now I am older and sadder and more protective of what limited resources I have."
(King also says that his husband is a federal worker and currently agonizing over whether he should take Trump's offer of resigning immediately for a severance, which many have warned Trump might not deliver on.)
Dixon Diallo wonders if typical street protests will be enough to stop the madness. She speculates that if enough people feel the pain of, say, the high cost of food and goods because of Trump-imposed tariffs, or the wholesale loss of their healthcare via a right-wing Congress, that could lead to more impactful forms of protest such as work strikes or consumer boycotts.
"These are oligarchs," she says of Trump and his closest allies, such as Elon Musk, who has been tasked with dismantling one government agency after another. "They only care about money, so the population has to flex its economic power."
Expressing one’s worst fears—and intentions to keep fighting
But in the same breath that such folks have expressed uncertainty about protesting, they admit that things could get so bad—massive losses to access of HIV meds, PrEP and other forms of healthcare; even further cruelty against targeted groups like immigrants, trans people and the broader LGBTQ+ community (which could include the Supreme Court overturning gay marriage as it did to Roe v. Wade); a harsh, even violent, crackdown on protest and dissent—that, ultimately, they have no choice but to fight back any way they can. That includes everything from appealing to GOP lawmakers' sense of decency and mercy when it comes to healthcare to filing lawsuits and leading, or at least participating in, protests, boycotts and other forms of resistance.
"A lot of Black women, particularly, felt betrayed by the American electorate that reelected Trump and then we said, 'We're taking a break [from civic engagement],’” says Dixon Diallo. “Well, this has brought people out of that break." That includes herself, she says.
She's echoed somewhat by King: "I'm still paralyzed with regret, heartache and fear," he says, "but I'll shake myself out of this paralysis at some point."
Says Bruce Ward, 67, a part-time Red Cross worker in New York City who has had HIV since the mid-1980s, "My elderly father used to shrug off [world problems] and say, 'I leave it all to the next generation.' And I vacillate between feeling that way, that I'm too old to deal with this, and wanting to be active and participate." He says he's not up to traveling to D.C. for major protests but would participate in local ones or do other activities like phone-banking.
(Meanwhile, he says, he is deriving comfort from his participation in the New York City Gay Men's Chorus, which he says has become much more racially diverse and trans-inclusive in recent years. "Just the act of singing together as a community" is comforting, he says.)
In Los Angeles, B., a gay white man with HIV who works in political communications, says that he thinks gay men, in particular, will really rise up in protest when they realize that their PrEP is threatened. (A case deciding whether the ACA has the right to require that its health plans cover 100% of PrEP costs goes to the Supreme Court this year.) "We've had a sexual revolution with PrEP,” he says, “and I'm concerned that if we lose it, we'll return to the old stigma of people with HIV, and serosorting"—people only hooking up with others of their own HIV status, be it positive or negative—"will be on the table again."
Yet in the same breath, he says, "This administration will collapse under the weight of its own incompetence, so I want people to stop clutching their pearls."
Spratley makes the point that the HIV community has been in dire circumstances before, even after the advent of effective meds in the early-mid 2000s when ADAP was not sufficiently funded, which led to meds waiting lists in several states. "We overcame that," she notes. (The program became better-funded in the years ahead.)
Others noted the importance of trying to stay grounded in the moment and not freak out over what might happen. “I don’t want to give energy to the unknown,” says Alicia Diggs in North Carolina, who is living with HIV and works in federally funded HIV research.
Yet others suggested that what might happen already is happening—and that resistance, in all its forms, needs to ramp up immediately. “Either we’re going to let them win for the next several generations or we’re going to dig in our heels and fight to the finish,” says Dixon Diallo. “That’s all we got.”