At the end of last week, Dr. Colleen Kelley said she was getting texts about every 10 minutes from colleagues whose HIV-related research grants were being terminated by the federal government.
“This is just pure chaos and insanity,” said Kelley, chair of the HIV Medicine Association. The National Institutes of Health canceled two grants last week for HIV projects she was working on, as well as funding for a large HIV clinical trial network she was involved with.
“It’s just a massive, massive bloodbath,” Kelley said.
The NIH has eliminated funding for dozens of HIV-related research grants, according to a US Department of Health and Human Services database that was updated last week, halting studies and threatening patient care across the country. Several researchers said the cuts put a stop to hopes of ending HIV in the US and around the world.
“HIV remains a significant public health challenge throughout the nation, particularly for sexual and gender minority individuals and people of color,” Halkitis wrote. “As a public health dean, HIV researcher for over two decades, and proud gay man, I am deeply concerned about the impacts these grant eliminations will have on our ability to end AIDS.”
Since 1981, HIV has led to the deaths of more than 700,000 people in the US. More than 1.2 million Americans now live with HIV, according to federal statistics. About 13% of people who have HIV don’t know they have it — one driver of the virus’ continuing spread.
Ending AIDS in the United States by 2030 was one of President Donald Trump’s stated priorities in his 2019 State of the Union speech, but the second Trump administration has hinted that it will make major cuts to HIV-related projects.
Experts worry the Trump administration will slash CDC’s HIV office and its budget. For the 2023 fiscal year, that was nearly $1.3 billion to prevent and control HIV, viral hepatitis, tuberculosis and infectious disease. Most of that funding goes to outside organizations such as state and local health departments and community-based organizations and about a quarter goes to the CDC for labs, outbreak responses and other costs.
The rolled back research funding come on top of cuts to USAID and funding that supports work and research managing the HIV epidemic overseas.
The United Nations warned on Monday that there would be a “surge” in AIDS deaths and new infections without US funding.
“[We] will see it come back, and we see people dying the way we saw them in the ’90s and in 2000s,” UNAIDS Executive Director Winnie Byanyima said, predicting a “tenfold increase” from the 600,000 AIDS-related deaths recorded globally in 2023.
HIV research hit by DEI cuts
HIV research spending accounts for a fraction of the US budget for HIV. In 2022, $2.7 billion – or 7% of the domestic HIV budget – was dedicated to domestic research across multiple agencies, according to KFF.
The grant termination emails explain that the HIV researchers’ work was no longer consistent with the priorities of the administration, Kelley said.
The emails received by Dr. Aniruddha Hazra and other colleagues studying HIV come in “two different flavors,” he said: “one that was more for those grants that were exploring diversity, equity, inclusion in medicine, and then another that was again looking at LGBTQ populations, as well,” said Hazra, an associate professor of medicine at the University of Chicago and director of the STI Services for Chicago Center of HIV Elimination.
Government departments have eliminated diversity language from websites and ended diversity, equity and inclusion programs after Trump signed executive orders that directed them to do so. Other executive orders have called for the recognition of only two sexes and ending inclusive language and programs that support transgender people.
Hazra, who said he has had grants canceled recently by the NIH and the US Centers for Disease Control and Prevention, said his research focuses on HIV treatment and prevention among marginalized populations.
“All of this sort of falls along the crosshairs of the current administration,” Hazra said.
Without funding, HIV may no longer be included in broader projects, either.
The NIH told Dr. Lisa Bowleg, a professor of applied social psychology in George Washington University’s Department of Psychological & Brain Sciences, that her funding was canceled for a project that sought to examine the dynamics of intersectional discrimination and social structural factors to understand Black men’s risk for mental health and substance abuse issues. The work also touched on HIV.
“As for the HIV piece, it is disturbing that more than four decades into the HIV epidemic, Black gay, bisexual and other men who have sex with men (and also Black heterosexual women, by the way) continue to have disproportionately higher HIV incidence and prevalence compared with white and other racial/ethnic groups in the U.S.,” Bowleg wrote in an email. “Terminating the research does not result in a termination of the problem; it simply exacerbates it.”
HIV is preventable, but Black and Latino men have a disproportionately high risk of catching the virus. A 2016 analysis by the CDC said that an estimated half of Black gay men and a quarter of Latino gay men would be diagnosed with HIV in their lifetime. There are gaps in understanding as to why these communities are specifically affected, and Bowleg’s research was among the projects with funding cancelled that were trying to fill those gaps.
Bowleg said she heard on Monday from three other colleagues who lost their NIH grants to study health equity topics.
“It’s been devastating,” she said.
“What’s lost with the end of my and so many other health equity-focused grants is the opportunity to even try to end the HIV epidemic in the U.S., and of course globally,” Bowleg wrote. “If we in the U.S. were grappling with grim HIV statistics for Black men just 8 or 9 years ago, I shudder to imagine what’s coming down the pike. The termination of research and the programs and interventions that the research was meant to inform, will only make the HIV epidemic (and so many other health conditions) exponentially and senselessly worse.”
Heavy competition for less funding
For researchers and their work, the immediate future is uncertain and the long-term future feels bleak.
Dr. Michelle Birkett, a psychologist and associate professor in the Department of Medical Social Sciences at Northwestern University, said the NIH canceled grant funding for a project that looks at disparities in HIV. She had just finished hiring people for the work and was about to start data collection when her school informed her that the funding had been eliminated. The NIH never contacted her directly, Birkett said.
Birkett said she is looking for other funding, but the competition will be stiff.
“A lot of my colleagues received terminations in the last few days,” she said. “I just worry about the viability of this work going forward.”
Hazra, at the University of Chicago, said the cancellation of his grants makes it difficult to plan how to move forward with the work.
“I think a lot of us are awaiting guidance from our own institutions as to what this means for both investigators but also for our staff,” he said.
Some institutions may provide bridge funding for some of the investigators, he said, but that is not sustainable.
What’s particularly frustrating, Hazra said, is that he and many other researchers feel that the country is close to ending the HIV epidemic.
“It’s confusing to see us come this far and then start to slide back on decades of progress, but that’s exactly what’s going to happen,” Hazra said.
The researchers said that cutting off funding will also hurt patients.
“People will die based on these decisions that have been coming through these past few weeks, and I don’t say that to be dramatic. I say that being a realist, that this will lead to a loss of American life, and I don’t know if the greater public fully understands that, at least not yet,” Hazra said. “This feels like a genocide in the making, and it’s not overstating it.”
The American Academy of HIV Medicine also says that deep cuts to HIV research grants mean “we would be witnessing innumerable lives lost and destroyed without access to lifesaving discoveries that are a direct result of ongoing HIV innovation and research efforts,” Bruce J. Packett, II, the group’s executive director, wrote in an email.
For years, HIV had been steadily decreasing, Packett wrote, large due to the success of appropriately funded research.
“These massive cuts to HIV research effectively turn back the clock on our domestic response to the HIV epidemic and broader sexual health, with a rise in new cases of HIV and other STIs very likely in both the short term and over time,” Packett said.