Mass layoffs across the US Department of Health (HHS) could have “dangerous” effects on the prevention of HIV and sexually transmitted infections (STIs), not-for-profit groups have warned.
More than 10,000 HHS positions have reportedly disappeared since Robert F Kennedy Jr, better-known as RFK Jr, became secretary of health. Among them are positions in the Office of Infectious Disease and HIV/Aids Policy, as well as at the world-famous Centers for Disease Control and Prevention (CDC).
Other key areas affected include jobs in STI and HIV response teams, the dismantling of the PrEP Implementation Branch, and cutbacks on HIV awareness campaigns.
RFK Jr is notorious for his conspiratorial views on healthcare and medical treatment, especially when it comes to LGBTQ+ care. The vaccine sceptic once claimed that chemicals in the atmosphere could be turning children trans.
His latest move, which comes as part of a series of firings and cuts to federal funding by the Trump administration, was branded “irresponsible” by experts and civil rights groups, who warned that it was likely to have dangerous effects.
The Human Rights Campaign (HRC) urged the government to reconsider, arguing that the plans would have “devastating consequences” for public health, particularly in the LGBTQ+ community, which have been “historically side-lined” when it comes to healthcare.
The advocacy group warned that actions such as further dismantling PrEP distribution branches would reduce access to vital information and resources about the preventative drug, which, it claimed, could risk “higher HIV rates”.
The cuts to the CDC would potentially cause vital data on HIV treatment to disappear and significantly delay “access to newer, more-effective treatments, particularly for marginalised groups”.
Matthew Rose, a social-justice advocate at HRC, branded the HHS cutbacks “irresponsible and dangerous” and risked more than just people’s jobs.
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“[The layoffs] are a direct blow to the health and well-being of LGBTQ+ communities around the nation,” he said. “Without vital surveillance, prevention programmes that expand access to PrEP, and data collection, we risk undoing years of progress in the fight against HIV and STIs.”
US could lose ability to ‘prevent HIV cases’
Elsewhere, the HIV+ Hepatitis Policy Institute warned that the US risked losing its ability to prevent further cases “in just a couple days”.
The organisation’s executive director, Carl Schmid, told the Washington Blade: “The expertise of the staff, along with their decades of leadership, has now been destroyed and cannot be replaced. We will feel the impacts of these decisions for years to come and it will certainly translate into an increase in new HIV infections and higher medical costs.”
Analysis of international HIV aid cuts in the US, France, the UK, Germany and the Netherlands showed that global cases could increase by 10 million by 2030, while HIV-related deaths might rise by 2.9 million by the start of the next decade.
Researchers at the Burnet Institute, in Australia, have cautioned that global infection rates could rocket if further cuts are made.
Anne Aslett, the chief executive of the Elton John Aids Foundation, said that if HIV funding was cut further, “millions more people will get sick, and health budgets will simply not be able to cope.”
Rebecca Denison expected to have a short life. She’d acquired HIV as a college student in the 1980s, she told the audience at an infectious disease conference in San Francisco earlier this month, and got an official diagnosis in 1990. “Back then,” she said matter-of-factly, “It was understood we were all going to die.” Within six years, that all changed. A new generation of drugs called protease inhibitors, when combined with other drugs, made the virus virtually undetectable in people with HIV, giving them a much greater chance of living to old age.
“Your work saved my life,” Denison, now an advocate for HIV-positive women, told the room.
She’s not alone. Over the last three decades, the development of preventative medicines along with better testing and treatment have cut new annual HIV infections by a staggering 60 percent globally. Now, a strategy of taking drugs before an HIV encounter—pre-exposure prophylaxis, or PrEP—can reduce the risk of transmission during sex by up to 99%.
Then, last year, scientists unveiled another, critical development: In a clinical trial of more than 5,000 girls and young women in Africa, a twice-annual shot called lenacapavir, administered as PrEP, blocked HIV infection for 100 percent of the more than 2,000 participants who’d received it. Shortly after, in a 3,000-person, multi-gender study across seven countries, 99.9% of participants who got lenacapavirdid not acquire HIV. A drug that worked this well (and required an injection just once every six months, no less) had never been seen before.
“It’s like, ‘Oh my god,’ we might have this tool that can really put an end to HIV.”Anna Katomski, a former program analyst at the United States Agency for International Development (USAID)
“I was sobbing,” Anna Katomski, a former program analyst at the United States Agency for International Development (USAID), recalls when she first saw the results presented at a conference. Lenacapavir isn’t a vaccine; such a thing has eluded scientists for decades. But as Science put it in an article naming the drug its 2024 “Breakthrough of the Year,” it may be the “next best thing”—a long-lasting, injectable, highly efficacious preventative. “There was just such a feeling of optimism,” Katomski says, adding, “It’s like, ‘Oh my god,’ we might have this tool that can really put an end to HIV.”
But now, that’s all at risk. As Denison warned in her speech at the conference in San Francisco, Robert F. Kennedy Jr., who once said that HIV was caused by the “gay lifestyle” and “poppers,” now heads the Department of Health and Human Services;thousands of government workers, including Katomski, have seen their jobs terminated or funding cut; and the so-called “Department of Government Efficiency,” led by tech billionaire Elon Musk, shuttered USAID, a decision that officialssay will hamper the country’s ability to fight malaria, polio, tuberculosis, HIV/AIDS, and other diseases across the world. The clawbacks don’t end there: Last week, the Wall Street Journal reported that the Trump administration is considering cutting funds at the Centers for Disease Control and Prevention (CDC) for domestic HIV prevention, too.
Particularly worrisome for HIV researchers is the threat to PEPFAR — the US President’s Emergency Plan for AIDS Relief — a program created in 2003 by Republican President George W. Bush to bring HIV treatments to the world, largely delivered through USAID. On January 20, President Donald Trump issued an executive order to “reevaluate and realign” the country’s foreign aid policies and called for a 90-day review of related programs. Shortly after, the Trump administration ordered the shutdown of operations at USAID, including work on PEPFAR. The administration has since backtracked, issuing a waiver allowing some PEPFAR programs to continue, including PrEP for pregnant and lactating women, but not for other “key populations” like LGBTQI people and sex workers, says Nidhi Bouri, the former deputy assistant administrator for Global Health at USAID. With foreign aid now under review through April 19, PEPFAR’s future is unclear.
This is a program that, throughout its 20-plus-year history, has saved an estimated 26 million lives. “It is the greatest act of humanity in the history of fighting infectious diseases that the world has ever known,” former PEPFAR head John Nkengasong recently told Science magazine.
Without a renewal of US aid, the world could see more than six times more new HIV infections by 2029.
So, what would it mean to walk away from this great act of humanity? In short, says Monica Gandhi, who directs the University of California, San Francisco-Bay Area Center for AIDS Research, it would be a “disaster.” Without a renewal of US aid, UNAIDS Executive Director Winnie Byanyima told the Associated Press last month, the world could see more than six times more new HIV infections by 2029, and a ten-fold increase in deaths to more than six million. Quite literally, it’s death by a thousand cuts.
Gandhi also worries about the possibility of HIV gaining resistance to drugs. As she explains, effectively treating HIV requires daily, combination antiretroviral drugs. Without reliable access to clinics and aid, she warns, people may try to stretch their pill supply, taking medicine less often or sharing with family members. “If you do this kind of rationing, what it leads to is drug resistance.”
And PEPFAR isn’t the only HIV program at risk. Several high-profile studies have also shut down in response to Trump’s order. One set of trials known as the MATRIX Study,a $125 million endeavor funded by USAID, was designed to evaluate new HIV prevention products for women, including a dissolvable vaginal film, dissolvable vaginal insert, and a vaginal ring meant to prevent pregnancy and HIV transmission. Catherine Chappell, an assistant professor and OB/GYN at the University of Pittsburgh who helped lead the trial for the vaginal ring, says Trump’s order meant her Phase I clinical trial was abruptly ended mid-data-collection. “We had participants in South Africa that still had these [placebo] rings in their vaginas,” she says. Chappell worries that dropping the study midway through could have “irreparably damaged” researchers’ relationship with the community. “It is just completely unethical,” she says.
Similarly, Katomski, the former USAID analyst, had been in the midst of data analysis on the MOSAIC study, a three-part trial intended to evaluate various forms of PrEP (oral, injectable, and vaginal ring) in women and girls. When the study stopped, so did Katomski and her colleagues’ analysis and data dissemination to partners and participants. “It not only is such a violation of ethics codes that we follow as researchers,” she says, “but also, from a scientific standpoint, it’s just such a waste of US taxpayers’ dollars.” Before losing her job at USAID, Katomski’s research division was considering trials for lenacapavir, the 2024 “breakthrough” drug. “All of that’s just been cut off,” she says.
It’s unclear how, exactly, this recent shift in priorities happened. Over the last 20 years, PEPFAR has seen wide, bipartisan support. In a 2023 op-ed published in The Hill, a group of senators, including Lindsey Graham (R-S.C.), one of Trump’s most vocal supporters, urged the reauthorization of PEPFAR, writing, “We must come together once again to reauthorize PEPFAR and work to end AIDS as a public health threat by 2030. Now is the time to remind the world what American leadership can accomplish when we put our minds and hearts to it.” Even former Sen. Marco Rubio, now Trump’s Secretary of State—who oversaw the purging ofUSAID—praised the agency’s work on “more than two dozen occasions” over the years, according to fact-checking site PolitiFact, “from hurricane relief to battling infectious diseases to aiding refugees.”
In short, after decades of research, science delivered the most effective, preventative HIV drugs the world has ever seen—and the US is throwing up its hands and abandoning efforts to share them with those most in need. That isn’t just a moral failing, experts say, it also goes against the country’s self-interest. For decades, officials have seen foreign disease prevention as a form of “soft power”—it engenders trust within the global community, while ensuring fewer infections both abroad and ultimately, at home. “When you prevent disease transmission, whether that be HIV, whether that be tuberculosis, whether that be malaria, in one area of the world,” Katomski says, “it prevents that disease from coming back to the United States.”
All of this is to say, now is a uniquely bad time to walk away from HIV research and aid. As Anthony Fauci, the former head of the National Institute of Allergy and Infectious Diseases, told conference attendees via video in San Francisco, “We can end the global HIV epidemic. We have the resources to do so.”
“Now is not the time to pull back,” he said, “for history will judge us harshly if we squander the opportunity that is before us.”
The Trump administration is preparing to eliminate all federal funding for domestic HIV prevention programs, a move that health experts say will undo decades of progress in combating the epidemic. The decision, which could be announced within the next 48 hours, would shut down the Centers for Disease Control and Prevention’s HIV prevention division and halt all federally funded prevention efforts, according to multiple sources familiar with the matter.
TheWall Street Journal was the first to report on the development, citing sources within the Department of Health and Human Services who say the move is part of a broader restructuring effort targeting federal public health programs.
When asked for comment, HHS Deputy Press Secretary Emily Hilliard told The Advocate that no decision had been made. “HHS is following the Administration’s guidance and taking a careful look at all divisions to see where there is overlap that could be streamlined to support the President’s broader efforts to restructure the federal government. This is to ensure that HHS better serves the American people at the highest and most efficient standard,” she said.
Additionally, an HHS official told The Advocate that if this decision is made, this work would be continued elsewhere at HHS.
“We are so close in the United States to ending the HIV epidemic, and it’s within reach in many ways,” Adrian Shanker, who was deputy assistant secretary for health policy in the Biden administration, told The Advocate. He now leads Shanker Strategies LLC, a consulting firm focused on advancing LGBTQ+ health and nonprofit development. “It takes continued investment, not pulling back from it. And it’s shocking and horrifying to hear that the Trump administration’s CDC is looking at devastating cuts to domestic HIV funding — cuts that wouldtake us backward instead of forwards in our domestic fight to end the HIV epidemic in the United States,” Shanker said.
20 years of work will be erased
For organizations on the front lines of the HIV epidemic, the stakes couldn’t be higher.
Stacie Walls, CEO of the LGBT Life Center in Norfolk, told The Advocate that her Virginia organization relies on federal HIV prevention funding to provide free testing, access to pre-exposure prophylaxis, and linkage to treatment.
“We have spent 20 years building these HIV and STI prevention programs to keep our community healthy,” Walls said. “The cuts to these programs would undo 20 years of work. People come to us for free testing. We link them to care, and they’re able to get treatment. Without these programs, that all disappears.”
The vast majority of people who rely on these services, she said, are uninsured and would have nowhere else to go.
“It’s already difficult to find providers who offer nonjudgmental, affirming care,” Walls said. “Without us, people won’t be able to go anywhere else to get this kind of treatment.”
Beyond HIV and STI testing, organizations like the LGBT Life Center provide comprehensive services addressing housing instability, nutrition, and mental health challenges — all issues that disproportionately affect marginalized communities.
“When people come here, they’re getting more than just an HIV test,” Walls said. “They’re getting support for homelessness, food insecurity, and other challenges. The return on investment in public health is immeasurable.”
The danger of this move
Jirair Ratevosian, an associate research scientist at Yale University and a global health expert, warned that the move would lead to more infections, greater economic strain, and increased health care costs over time.
“This is a dangerous move,” Ratevosian told The Advocate. “Putting prevention programs on hold today means paying a much higher price tomorrow — in lives, economic stability, and public health.”
Ratevosian emphasized that scientific advancements have brought HIV prevention to a turning point, with long-acting PrEP options expanding access.
“This was our chance to take HIV prevention to a whole new level, and instead we’re hitting the brakes,” he said. “This isn’t just bad policy — it’s a direct threat to public health.”
While he acknowledged that reviewing government programs for efficiency is reasonable, Ratevosian stressed that a wholesale elimination of prevention efforts defies logic.
“It’s reasonable to look for ways to improve HIV outcomes,” he said. “But stopping prevention altogether? Exactly at a time when we should be accelerating? This is how we risk losing hard-earned progress.”
The bipartisan approach to HIV prevention now at risk
Shanker noted that HIV prevention has long been a bipartisan issue, with previous administrations recognizing its importance.
The Trump administration’s sudden reversal, he said, defies public health logic. “We are close, but we’re not there yet,” Shanker said. “And it’s not the time to cut these programs.”
“This isn’t just about HIV,” Walls said. “It’s about public health, it’s about unemployment, and it’s about people who have built their careers serving the community losing everything overnight. It’s painful to watch this being dismantled.”
For many experts and advocates, the sheer scale of the proposed cuts is staggering. In recent days, the Trump administration and Elon Musk’s Department of Government Efficiency have cut programs across the federal government, often because they included keywords that indicated diversity, equity, inclusion, accessibility, or LGBTQ-related programs.
“I can’t speak to the inner thinkings of the Trump administration,” Shanker said. “But I can say that ending the HIV epidemic has been and should continue to be a priority for all Americans, regardless of their political party. It’s unthinkable that the Trump administration would even consider such cuts.”
Cutting HIV prevention won’t save money — it will cost more
For those who see these cuts as a way to save taxpayer dollars, Ratevosian pushed back, emphasizing that the long-term costs will be far greater.
“When we prevent an HIV infection, we save hundreds of thousands of dollars in health care costs down the road,” he explained. “Keeping people HIV-negative protects not just those at risk but the entire public health system.”
Beyond public health, he pointed out that HIV prevention contributes to economic stability and workforce productivity.
“A healthier nation drives economic growth,” Ratevosian said. “And if we stop investing in prevention now, it’s only going to cost us more to get back on track later.”
Doctors from Harvard Medical School today challenged the removal of their articles from the Patient Safety Network (PSNet), a government-run website for doctors and medical researchers to share information about medical errors, misdiagnoses, and patient outcomes. The papers were removed as part of a takedown of information that the government contends promotes “gender ideology,” including any articles containing certain prohibited terms, including “LGBTQ” and “trans[gender].”
“Here in Massachusetts, we deeply understand that academic research and knowledge-sharing is essential to our economy and for the health care of all people,” said Rachel Davidson, staff attorney at the ACLU of Massachusetts. “Our clients were given an impossible choice between removing their article from PSNet entirely or censoring parts of it. This is an intentional erasure of knowledge, an attack on the integrity of scientific research, and an affront to the public’s need for accurate, adequate health information.”
The suit argues that the government violated the First Amendment by imposing a viewpoint-based and unreasonable restriction on the doctors’ participation in a forum the government has opened to private speakers. It also argues that the government violated the Administrative Procedure Act, including by removing articles without a reasoned basis. OPM, AHRQ, and HHS are named in the suit.
The Centers for Disease Control and Prevention on Friday is scrubbing a swath of HIV-related content from the agency’s website as a part of President Donald Trump’s broader effort to wipe out diversity, equity and inclusion initiatives across the federal government.
The CDC’s main HIV page was down temporarily but has been restored. The CDC began removing all content related to gender identity on Friday, according to one government staffer. HIV-related pages were apparently caught up in that action.
CDC employees were told in a Jan 29. email from Charles Ezell, the acting director of the U.S. office of personnel management, titled “Defending Women,” that they’re not to make references or promote “gender ideology” — a term often used by conservative groups to describe what they consider “woke” views on sex and gender — and that they are to recognize only two sexes, male and female, according to a memo obtained by NBC News.
President Donald Trump speaks before signing the Laken Riley Act in the East Room of the White House in Washington, DC, January 29, 2025. Perdo Ugarte / AFP / Getty Images
Employees initially struggled with how to implement the new policy, with a deadline of Friday afternoon, the staffer said. Ultimately, agency staffers began pulling down numerous HIV-related webpages — regardless of whether it included gender — rushing to meet the deadline. It was unclear when the pages might be restored.
“The process is underway,” said the government agency staffer, who requested anonymity for fear of repercussions. “There’s just so much gender content in HIV that we have to take everything down in order to meet the deadline.”
The White House did not immediately respond to requests for comment. Communications representatives within the CDC’s HIV and STD prevention departments did not return requests for comment; last week, the Trump administration ordered all employees of HHS, which includes the CDC, to stop communicating with external parties.
Trump’s sweeping executive order to wipe out DEI programs across the federal government threatens to upend the CDC’s efforts to combat HIV among Black, Latino and transgender people — groups disproportionately affected by the virus — according to public health experts.
The executive order, signed by Trump last week, proclaims that the U.S. government will recognize only two sexes — male and female — and end what it characterizes as “radical and wasteful” DEI spending. It also requires that the government use the term “sex” instead of “gender.”
These sweeping directives from the Trump administration, health experts say, threaten to dismantle the CDC’s HIV prevention division, as addressing disparities based on race, sex or gender identity is fundamental to HIV prevention work. The virus has long disproportionately impacted various minority groups, including Blacks and Latinos, gay and bisexual men and transgender people.
Separately, a website that provides technical assistance and training resources to agencies and clinics that receive funding from the Ryan White HIV/AIDS Program, which is run by HHS and provides safety-net funding for the care and treatment of low-income people with HIV, has also been pulled down this week, replaced by a note that says it is “under maintenance.”
An archived version of the site indicates it was active as recently as Jan. 24 and rendered inactive by Jan. 29.
“How can we work on preventing HIV among the populations who are most at risk for it if we can’t talk about it?” said the government worker. “This essentially shuts our entire agency down. We are scrambling to figure out what to do.”
Since Trump’s inauguration, an NBC News analysis found, the administration has scrubbed dozens of webpages that mention diversity, equity, inclusion, gender or sexuality from the sites of federal health agencies like the National Institutes of Health, Food and Drug Administration, CDC and Department of Human and Health Services.
Reproductiverights.gov, the HHS website that provided information about access to reproductive care, including abortion, in the U.S. is among the sites that are now offline. The FDA’s Office of Minority Health and Health Equity website has also been purged, and the NIH’s Office of Equity, Diversity and Inclusion website now redirects to a page on equal employment opportunity.
The formation of the CDC’s HIV prevention division dates back to the early 1980s, as the agency responded to the emerging AIDS epidemic.
The agency is responsible for tracking HIV infections across the U.S., conducting research — in some cases with outside groups — that inform HIV transmission efforts, and also launching initiatives to promote testing and prevention, such as the use of the HIV prevention pill, known as PrEP.
Prioritizing local control of HIV prevention efforts, the CDC provides millions of dollars of grants to state and local health departments and nonprofits to conduct much of the on-the-ground efforts to surveil and combat the virus.
The bulk of federal spending on HIV research, including on experimental vaccines, treatments and cure therapies, comes from the NIH. It remains unclear whether such funding is at risk as the Trump administration exerts its influence across the nation’s health agencies.
But Trump’s pick to lead HHS, Robert F. Kennedy Jr., has said he wants to impose an eight-year “break” on infectious disease research to prioritize studying chronic health conditions, such as obesity and diabetes.
While HIV is an infectious disease, it is also considered a chronic health condition, thanks to effective antiretroviral treatment that has extended the life expectancy of people on such medication to near normal. People with the virus are at higher risk of various other chronic health conditions associated with aging, including cardiovascular disease and diabetes. The NIH has devoted considerable resources to seeking means to mitigate these intersecting health risks.
The annual HIV transmission rate peaked in the mid-1980s at an estimated 135,000 cases per year and plateaued at about 50,000 cases during the 1990s and 2000s, according to the CDC. In recent years, as PrEP has become more popular, HIV has declined modestly, including a 12% drop between 2018 and 2022, to an estimated 31,800 new cases. But such progress pales in comparison to the steep recent declines seen in many other wealthy Western nations.
In 2022, the most recent year for which granular data are available, Blacks and Latinos accounted for 37% and 33% of new HIV cases, despite being just 12% and 18% of the U.S. population.
About two-thirds of new cases occur among gay and bisexual men, who are just 2% of the adult population. While research indicates that transgender women in particular have a high HIV rate, the CDC’s routine HIV surveillance reports do not break down the data according to gender identity.
HIV advocates expressed concern that the Trump administration’s anti-DEI efforts would hamstring the CDC’s efforts to combat HIV and jeopardize hard-fought gains.
“An HIV prevention policy that does not tailor outreach, programs, and services to the communities most in need could increase stigma, make outreach and engagements more challenging, and affect trust,” Lindsey Dawson, an associate director at KFF, a nonprofit group focused on health policy, wrote in an email.
Politics have collided with HIV prevention and advocacy since the dawning of the epidemic.
During the 1980s, activists excoriated President Ronald Reagan for his administration’s slow response to the burgeoning AIDS crisis that was decimating the gay community.
In 1987, Congress passed the Helms Amendment, derisively known as the “No Promo Homo” bill, which prohibited the CDC from creating HIV educational materials or developing programs that would “promote or encourage, and condone homosexual activities.”
Carl Schmid, executive director of the HIV+Hepatitis Policy Institute, said that during George W. Bush’s presidency, researchers and organizations writing applications for federal grant funding for HIV-related matters had to avoid making any reference to gay people or condoms.
The iron-fisted impact of Trump’s anti-DEI order, however, appears to be a league unto itself, HIV prevention experts said.
“Many programs that support disadvantaged groups in the United States are in the crosshairs of the administration,” said Dr. Jeffrey Klausner, an infectious disease expert at the University of Southern California and a veteran of the fight against HIV. “I am very worried about HIV prevention in the United States. We have had tremendous success in the United States brought about by career, highly dedicated NIH and CDC scientists who then transferred their discoveries to the private sector for sales and implementation.”
The government employee called Trump’s order “demoralizing.”
The U.S. Department of Health and Human Services has eased the regulations on kidney and liver donations between HIV-positive donors and HIV-positive recipients, something that HHS says will increase access to these organs.
A rule on interpretation of the HIV Organ Policy Equity Act removes requirements for clinical research and institutional review board approval for such donations, “based on research demonstrating the safety and effectiveness of kidney and liver transplants between donors and recipients with HIV,” says an HHS press release. The rule became final Wednesday.
“We continue to do everything in our power to increase access to life-saving organs while addressing health inequities faced by people with HIV,” HHS Secretary Xavier Becerra said in the release. “This rule removes unnecessary barriers to kidney and liver transplants, expanding the organ donor pool and improving outcomes for transplant recipients with HIV. This evidence-based policy update demonstrates our commitment to ensuring all Americans have access to the care they need.”
“Research shows that kidney and liver transplants between donors and recipients with HIV can be performed safely and effectively,” added Adm. Rachel Levine, assistant secretary for health. “This policy change reflects our commitment to following the evidence and updating our approaches as we learn more. By removing research requirements where they are no longer needed, we can help more people with HIV access life-saving transplants.”
The HOPE Act, passed in 2013, allows for organ donation by people with HIV only to those who are already living with the virus. Under the act, “donors with HIV must not have evidence of opportunistic infections and recipients must have a stable CD4+ T-cell count and established HIV suppression and control on effective antiretroviral therapy,” the new rule explains.
Research has demonstrated “that the safety and outcomes of kidney and liver HOPE Act transplants are well established, with over 517 HOPE Act kidney and liver transplants conducted to date,” the new rule notes. The requirements for these transplants that were revoked by the new rule created an unnecessary barrier, according to HHS.
HHS published the proposed rule in the Federal Register in September and received 56 public comments on it before it became final.
Also Wednesday, the National Institutes of Health, part of HHS, published a notice seeking public comment on a proposed revision to its research criteria for HOPE Act transplants of other organs, such as heart, lung, and pancreas. “This effort aims to streamline the HOPE Act research requirements and continue to build an evidence base of outcomes data on HOPE Act transplants of organs other than livers and kidneys,” the press release says. Comments are due by December 12.
On World AIDS Day, we unite to remember those we’ve lost, support those living with HIV, and renew our commitment to ending the epidemic. Raising awareness is vital to breaking stigma, promoting testing, and advancing treatment. Together, we can make a difference.
Join us in spreading the word, educating others, and standing up for a future free from HIV/AIDS. Together we can make a difference.
For over 40 years, Face to Face has been at the forefront of compassionate care and innovative responses to emerging health crisis here in Sonoma County. Our journey began in 1983 as a grassroots organization responding to the devastating impact of the AIDS epidemic. Since then, we have expanded our services to meet the evolving needs of our community, from HIV prevention and support to addressing the opioid overdose epidemic, housing insecurity, and the rising mental health crisis.
At Face to Face, we lead with love.Every day, we open our doors and our van to provide services without judgement, meeting people where they are. Our community-focused approach ensures that no one faces their health challenges alone.
Join the Fight Against AIDS December 1st is World AIDS Day—a day to unite in the fight against HIV, show support for those living with the virus, and remember those who have lost their lives. This year, let’s raise awareness, promote testing, and break the stigma surrounding HIV/AIDS. Together, we can work toward a future without AIDS.Aids Prevention
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Half of people with HIV in the United States are living in places that are vulnerable to extreme weather and climate disasters, according to a new analysis from the left-leaning Center for American Progress (CAP).
The report from CAP released Wednesday finds that the areas of the country where HIV is being diagnosed at disproportionately high rates are also places most at risk of disasters. The analysis used data from the Ending the HIV Epidemic in the U.S. (EHE) program, a federal program that aims to reduce the rate of new HIV infections, and the Federal Emergency Management Agency (FEMA) national risk index. FEMA’s tool takes into account the frequency of disasters, but also the vulnerability of the population, accounting for certain at-risk demographics like low-income and socially disadvantaged people.
Fifty locations, including 48 counties, Washington, D.C., and San Juan, Puerto Rico, have been designated by EHE as high-priority areas to combat HIV because they are where more than 50 percent of new HIV cases occur. On average, those places had a national risk index score of 96.8 out of 100.
“It is not surprising that those most at-risk live in areas particularly vulnerable to extreme weather and climate events. That is true for many other climate-sensitive health outcomes,” said Kristie Ebi, professor of global health at the University of Washington, who reviewed the analysis. “The poor and marginalized are generally at higher risk and often live in less desirable locations that are less desirable because of vulnerability to extreme weather and climate events.”
Haley Norris, policy analyst with CAP and author of the report, said what stood out to them was the variability in threats faced by the different parts of the country. On the West Coast, wildfires cause issues for people with HIV because many develop lung conditions that are exacerbated by wildfire smoke. In the South and Northeast, flooding and hurricanes pose unique health issues for people with HIV by making it more difficult to access medical care. All three of these types of climate disasters are becoming more destructive due to climate change.
“We’re seeing extreme weather and climate events that are quite far outside of historic experience,” Ebi said, pointing to flooding in Asheville, North Carolina, as one recent example.
For those with HIV, those extreme events are making it harder to stay on track with their medications, which stop the disease from progressing to AIDS and prevent transmission to others.
Vatsana Chanthala is director of the New Orleans Health Department’s Ryan White HIV/AIDS Program, a federal initiative that provides funding for clinics and treatments that support low-income people. New Orleans is located in one of the priority jurisdictions to combat new HIV infections.
After Hurricane Ida in 2021, her team surveyed patients in the program to gain a better understanding of how the disaster may have disrupted their care or access to medications. HIV treatment involves taking antiretrovirals daily or bimonthly injections to suppress the virus and keep it at a level that prevents it from spreading. After Ida, pharmacies closed due to damage; electricity was also out for nearly two weeks in parts of the city, making it difficult to contact pharmacies to refill lost prescriptions or others that had run out, Chanthala said. The high cost of the drugs means some pharmacies were hesitant to fill prescriptions, worried that people wouldn’t come to pick them up.
The cost of the drugs was also an issue for those who evacuated: Many did not know that they could use their insurance to cover medication out of state, so they did not attempt to purchase the medication due to out-of-pocket costs, Chanthala found. Of the 194 patients surveyed, 30 percent of those who evacuated said they had trouble accessing care, and of those who stayed in New Orleans, 32 percent also had trouble accessing care.
Another barrier to taking medications is the stigma surrounding HIV. In times of disaster, many people evacuate to the homes of family and friends, and some people in the survey said their family was unaware they had HIV.
“There’s still a lot of fear with HIV and so many clients don’t disclose their status,” Chanthala said. “And so they find ways to hide their medications, and if they’re around people, they’re less likely to take those medications out.”
Norris, the author of the CAP report, said one study on HIV care and wildfires in California also found that people expressed fear of disclosing they had the disease.
“These are people who are going through extremely stressful, life-destroying situations and they have to do the emotional calculation of, ‘will disclosing this make me less safe?’” they said. “That is the hardest part of the puzzle for us to figure out. It is not just about access, it is the reality that HIV stigma is still very alive and well and still very powerful.”
The risk associated with not taking medications is high for people with HIV. If someone stops taking their antiretrovirals, also known as ART, or if they run out of medication, their viral load will go up over time, said Dr. Paula Seal, who works at the HIV Outpatient Clinic at the University Medical Center New Orleans. The length of time it would take for that to happen depends on the individual patient and when they were diagnosed with HIV.
But Seal said they stress the importance of patients staying on their medication.
“When you have trouble is when patients are running out of medications because if they don’t have enough medicine, then they start skipping doses to make it last longer, that’s when we run into problems, and then the virus can become resistant to those medications,” Seal said.
To offset those risks, Seal and other providers follow a hurricane preparedness protocol, talking with patients every year before hurricane season hits and urging them to refill their prescriptions. In many instances, people can get up to 90 days covered by insurance, which could last through a hurricane season. Seal also provides numbers to pharmacies they can contact if something happens to their medication.
This October, the Biden administration updated its guidelines for providers who are treating people with HIV who have been displaced, Norris said. The new guidelines walk providers, who might not have expertise in treating HIV, through how to assess and prescribe medication for new patients who otherwise may have disruption in their care. “Providing ART is very complex, it’s really really good that they were able to get that out when they did,” they said.
One way that the Ryan White Program could become more nimble is by having its services follow the enrolled patients, Chanthala said. Currently, patients at the Ryan White clinics have access to wrap-around services, like transportation and help with housing, but they lose that support if they evacuate.
“Medications are important, and adherence is important. But if a person needs food, needs a place to stay, that’s going to be first on their minds,” she said.
Currently, these supports are not provided through money directly, but Chanthala thinks that in disaster situations having that flexibility to provide funds for people with high medical needs could also help: “If they can’t afford gas to get out of the area, they aren’t going to evacuate.”
Every election changes the political landscape. These changes will impact the ways we advocate and live our lives, but they do not alter the goals we seek to achieve. Regardless of the outcome of any election, it is our mission to end the HIV epidemic in the United States. But particularly after this election, during these uncertain times, we must remain vigilant and proactive to protect essential funding and ensure that health services remain accessible to those who need them most.
“Now, more than ever, we must act with urgency to ensure that President-Elect Donald Trump and Vice-President Elect JD Vance understand that critical services and resources that people living with HIV depend on are not to be compromised,” said Jesse Milan Jr. JD, President and CEO of AIDS United.
AIDS United stands on its history with its 60 – members of the Public Policy Council of turning challenges into opportunities, driving the conversation forward to protect healthcare access for not just for people living with and vulnerable to HIV but all Americans with pre-existing conditions.
In the wake of President-elect Trump’s first victory in 2016, more than 600 HIV advocates came together in that following year’s AIDSWatch to fight for one another in the largest and most impactful HIV advocacy event in our history. We worked with policymakers to turn a moment of uncertainty into a call for justice and an opportunity for progress, protecting the Affordable Care Act and helping usher in the Ending the HIV Epidemic Initiative that has significantly lowered HIV transmission rates and provided care to tens of thousands of people living with HIV. We must once again unite in solidarity to protect our communities and forge a new path forward.
To speak to someone from AIDS United’s team or leadership, please contact AIDS United’s Communications Department at communications@aidsunited.org.
About AIDS United – AIDS United’s mission is to end the HIV epidemic in the U.S. through strategic grant-making, capacity-building, and policy/advocacy. AIDS United works to ensure access to life-saving HIV care and prevention services and to advance sound HIV-related policy for populations and communities most impacted by the U.S. epidemic. As of January 2021, our strategic grant-making initiatives have directly funded more than $118 million to local communities, and we have leveraged more than $184 million in additional investments for programs that include, but are not limited to, syringe access, access to care, capacity-building, HIV prevention, and advocacy. Learn more at www.aidsunited.org.
A new study conducted by the California HIV/AIDS Policy Research Centers (CHPRC) explores the potential of artificial intelligence (AI) chatbots to aid in HIV prevention efforts. The research led by Marisa Fujimoto at UC Berkeley and the Northern California HIV/AIDS Policy Research Center is titled “Evaluating AI Chatbots for HIV Prevention: An Assessment of Response Quality and User Tailoring” and examines the ability of AI-driven chatbots to deliver accurate, engaging, and personalized health information to people from groups affected by HIV and community-based organizations. More information is available at www.chprc.org.
As healthcare increasingly turns to digital solutions, this study provides critical insights into how AI can be leveraged to address HIV prevention in communities that may face barriers to traditional healthcare access. The research assesses not only the technical performance of these chatbots but also how well they cater to individual needs, offering an evaluation of both response quality and user-tailoring in a public health context.
Key Findings Include:
High Response Accuracy, but Variable Clarity: AI chatbots can provide HIV prevention information and guidance that is accurate and neutral in tone across a wide range of HIV prevention topics, including pre-exposure prophylaxis (PrEP). However, some responses had a disjointed flow, lacked clear conclusions, and/or did not follow current best practices for use of non-stigmatizing HIV language.
Personalized Engagement: Chatbots successfully simplified their responses when asked, but they largely did not tailor their responses to the needs of specific populations, such as transgender users or users in specific locations.
Opportunities for Integration with Existing Public Health Services: When responses are reviewed and tailored by health professionals, AI chatbots may be a valuable tool for community-based organizations to enhance the efficiency and quality of service provision and to support the development of educational materials.
“New and innovative ways to enhance HIV care and prevention efforts are needed, especially to reach younger, tech-savvy groups who may turn to digital solutions for health information,” said Marisa Fujimoto, the study’s lead author. “Based on our results, we are cautiously optimistic about the use of AI chatbots for HIV prevention by individuals from communities affected by HIV, community organizations, and health providers. Chatbots are capable of providing reasonably accurate information with few access barriers and could be used best in conjunction with advice from health professionals to optimize information and provide referrals to services.
Nevertheless, our research also raises important questions about how to ensure that AI chatbots provide inclusive guidance that addresses the needs of communities disproportionately affected by HIV, like those seeking gender-affirming care.”
The research, funded by the California HIV/AIDS Research Program through the University of California Office of the President, was led by Marisa Fujimoto, Lauren Hunter, and Sandra McCoy from the University of California, Berkeley School of Public Health, alongside Simon Outram and Laura Packel from the University of California, San Francisco.
About California HIV Policy Research Centers Three collaborative California HIV/AIDS Policy Research Centers, funded by the California HIV/AIDS Research Program, support research and policy analysis that addresses critical issues related to HIV/AIDS care and prevention in California. The work of the research centers focuses on a “rapid response,” which involves short-term research projects designed to quickly address questions that emerge in a dynamic health policy environment.
California Center for HIV Syndemic Policy Research The California Center for HIV Syndemic Policy Research (CalCenSyn) is led by Dr. Laramie Smith (UCSD) and Dr. Orlando Harris (UCSF). CalCenSyn seeks to expose the root causes of HIV and syndemic conditions through community-focused capacity building. such as tobacco, substance use, and socio-structural barriers to treatment through its community-academic collaborative.
Southern California HIV/AIDS Policy Research Center The Southern California HIV/AIDS Policy Research Center, led by Dr. Ian Holloway (UCLA) and Dr. Jamila Stockman (UCSD), celebrated a successful year of collaboration. Their collective work includes academic manuscripts, policy briefs, infographics, conference presentations, consultations with the California Board of Pharmacy, and has garnered additional state and federal funding. In 2024, the Center is examining the implementation of the California Healthy Youth Act, California’s comprehensive sex education law; the intersection of HIV and intimate partner violence; and strategies to implement integrated HIV prevention and treatment services, especially for women experiencing violence.
Northern California HIV/AIDS Policy Research Center The Northern California HIV/AIDS Policy Research Center is led by Dr. Emily Arnold (UCSF), Dr. Sandra McCoy (UCB), and Laura Thomas (San Francisco AIDS Foundation). In 2024, the Northern California HIV/AIDS Policy Research Center is planning to examine the impact of staffing shortages on the HIV healthcare system and is looking forward to working collaboratively with the other PRC on rapid response research addressing syndemic factors that contribute to HIV in California.
