Deep cuts to HIV research could halt decades of progress, scientists say

But nearly two-thirds of the 1.2 million people at the greatest risk of contracting HIV infections are not on PrEP, health officials say.

Researchers have shifted their focus to identifying ways to achieve widespread use of PrEP among people most likely to encounter the virus, primarily Black and Latino men who have sex with men. That is crucial to stopping wider transmission of HIV.

But in recent weeks, the National Institutes of Health has pulled funding from many of those studies.

“Tremendous progress has been made in the last three decades, but the crux of the matter is we weren’t finished. We weren’t reaching everyone we need to reach,” said Colleen Kelley, an infectious-diseases physician and chair of the HIV Medicine Association, an advocacy group of medical professionals. “It’s like the rug is being ripped out under us.”

Officials at NIH and its parent agency, the Department of Health and Human Services, did not answer questions about the grant cuts.

In his 2019 State of the Union address, Trump vowed to “defeat AIDS in America and beyond” after launching a campaign to end transmission by 2030.

But in recent days, Trump’s new administration eliminated numerous parts of federal health agencies devoted to that goal, according to multiple current and former employees and policy advocates briefed on the cuts.

It shuttered the HHS Office of Infectious Diseases & HIV Policy that coordinated the federal response. The Centers for Disease Control and Prevention lost staff in its HIV prevention division who conducted studies and surveillance, ran health campaigns and supported local prevention programs. The CDC’s top HIV official was notified he would be among nine senior leaders reassigned to the Indian Health Service.

“We’re being cut off at our legs, and they want to make America healthy again?” said Carl Schmid, executive director of the advocacy group HIV + Hepatitis Policy Institute.

Critical HIV programs would continue in a new Administration for a Healthy America office in HHS, the agency said in a statement provided by spokeswoman Emily G. Hilliard.

Such consolidation would be counterproductive, said Adrian Shanker, the deputy assistant secretary for health policy in the Biden administration.

“It’s not possible to do all that work to end the HIV epidemic with so many fewer people and without the institutional knowledge of all the leadership of these key offices,” said Shanker, who now consults for LGBTQ+ and HIV organizations.

The health agency overhaul follows weeks of cancellations of PrEP studies, including: A clinical trial to determine whether Black and Hispanic gay men are more likely to keep using the medication with the support of a patient navigator; an eye-tracking study to identify PrEP messaging that people notice and read; and research that would have measured the real-world effectiveness of periodic injections of the drugs vs. daily pills.

The recent cuts extend globally and to other areas of HIV research. Studies in South Africa, the Philippines and Canada were among those that lost funding. A 25-year-old group of clinical trials established to easily recruit adolescents for HIV studies was ordered to shut down, as were surveys to pinpoint the factors that place cisgender women most at risk for acquiring sexually transmitted infections and HIV, including whether they are homeless or experienced domestic violence.

In all, NIH terminated at least $759 million in grants involving HIV research, according to an unofficial tally kept by academics tracking the cuts. The agency awarded about $2.3 billion in HIV research grants last fiscal year. Federal officials did not respond to requests to offer their own accounting

“It’s a slaughter,” said Jim Pickett, a longtime HIV activist and a consultant to the youth trial network “They are taking money and investments and setting it on fire.”

Antiretroviral drugs turned HIV from a death sentence to a manageable chronic condition in the late 1990s and 2000s. Now, with HIV infections also preventable, an elusive end to the epidemic in the United States is closer than ever.

The grant terminations unleashed chaos as researchers scrambled to figure out how to cobble together other funding to keep their studies going. Many are planning to appeal the decisions and are hoping courts will step in or private foundations and corporations will replace the lost funding. But government funding has long been the backbone of HIV/AIDS research.

The termination letters often criticize the studies as unscientific because they relate to diversity, equity and inclusion or gender identity.

But scientists say it’s impossible to fight HIV without acknowledging people in the demographic groups that disproportionately contract the virus and are less likely than cisgender White men to use PrEP: Black and Hispanic gay men, transgender women and Black women. Men who have sex with men acquire more than two-thirds of new HIV infections. Nearly half of them are Black and Hispanic.

Public health officials prioritize spending prevention dollars for those most at risk, a strategy they say also reduces the threat to the general population.

“When we talk about maximizing resources and impact, you want to focus on the populations that are affected most,” said Philip Chan, an associate professor of medicine at Brown University who lost funding for the study on Black and Hispanic gay men’s use of PrEP. “This is based on data and science. This is not promoting DEI.”

The cuts to agencies and research have been especially upsetting to HIV activists who praised Trump during his first term, when he released a plan to end the HIV epidemic by 2030. Health officials implementing that plan emphasized the need to direct resources and research to areas and demographic groups most affected by HIV.

Since 2020, a government website has stated that “HHS agencies will support states and local communities to implement strategies to increase access to and use of PrEP - especially among African American and Latino gay and bisexual men, African American women, and other populations disproportionately affected by HIV.”

Researchers said Trump is punishing them for supporting the mission he initiated during his first term.

“We have already invested all of this money to begin these studies which were grounded in evidence and peer-reviewed as scientifically superior,” said Rebecca Schnall, a research professor at the Columbia University School of Nursing. She lost grants for studies on the effectiveness of HIV prevention strategies, including in communities identified as priorities under Trump’s plan to end HIV.

“Essentially, we will have no return on investment,” she said.

The crackdown on HIV research marks a reversal for veteran researchers and activists who fought to get the government to take the epidemic seriously in the 1980s and 1990s.

“This generation came up saving people’s lives," said Jesus Ramirez-Valles, a professor of medicine at the University of California at San Francisco, who lost funding for research on prevention and treatment groups that serve gay and bisexual Latino men. “And that’s what’s being lost.”

It was coming of age at the height of the AIDS epidemic that inspired Jeffrey Wickersham’s passion for research. The first openly gay man Wickersham knew was a co-worker at a Texas theater in high school. He died of AIDS-related complications in 1996, Wickersham’s freshman year of college. When Wickersham, now 48, came out to his parents that year, his mother said she did not want him to die of AIDS.

By the time he completed his postdoctoral training at Yale in 2012, AIDS deaths had plunged and the Food and Drug Administration had approved PrEP. As an associate professor of medicine at Yale, Wickersham focuses on research to improve both prevention and treatment.

NIH terminated funding for five projects Wickersham worked on. They include research to improve medical care for transgender women living with HIV and to develop an app that helps reduce the risk of HIV infection among people who use stimulant drugs such as methamphetamine.

“It’s like seeing all the success of your child’s growth and development, only to see all of that stripped away,” Wickersham said.

The Adolescent Trials Network for HIV Interventions, first formed in 2001 to support studies of teenagers and young adults who are notoriously difficult to recruit for scientific research, received a stop-work order that shut down research at 14 sites where seven studies were being conducted.

The termination set off a scramble as researchers try to figure out how to comply with the federal directive without violating professional ethics. For example, some adolescents and young adults already are receiving counseling through one study of behavioral interventions to lower the HIV risk of young males who use stimulant drugs.

“It’s a huge ethical issue - how do we intervene when we’ve been told to stop work? What if somebody is suicidal?” said Sybil Hosek, a research medical professor at the University of Illinois Chicago and co-principal investigator of the network. “Ethically, we are going to do it anyway, but we have been told to stop.”

They are hoping the cancellation will be revoked once the federal government understands the damage.

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Lena H. Sun and Caitlin Gilbert contributed to this report.