Administration to phase out NIH support of HIV clinical guidelines
The National Institutes of Health's support for federal guidelines that steer the treatment of more than a million HIV patients in the United States will be phased out by next June, according to the agency's Office of AIDS Research, a move that troubled some doctors and raised questions about whether the guidelines themselves will change.
It is unclear whether Health and Human Services Secretary Robert F. Kennedy Jr. plans to bring the guidance in line with his own controversial views about an infectious disease that 30 years ago was the leading cause of death for people 25 to 44 years old.
The Office of AIDS Research, which is part of the National Institutes of Health, informed members of the panels responsible for the guidelines in a letter that, 'in the climate of budget decreases and revised priorities, OAR is beginning to explore options to transfer management of the guidelines to another agency within' HHS.
The guidelines, detailed recommendations on how to diagnose and treat medical conditions, can affect what tests, treatments and medications are covered by insurance companies and Medicare, said Aniruddha Hazra, associate professor of medicine at University of Chicago Medicine.
The lack of clarity in the letter caused some in the medical community to worry that switching oversight of the guidelines to another branch of HHS could be a first step by the Trump administration toward more drastic changes in the government's treatment recommendations.
'From a practical standpoint, it's monumental,' Hazra said of the news about the guidelines, which he called the basis for much of the knowledge about HIV.
'The loss of this kind of federal guidance throws everything into the dark,' he said.
Hazra described the guidelines as a dynamic document that changes at least once or twice a year as new studies and scientific evidence come to light.
Guidelines for HIV are divided into a half-dozen categories, including sets for adults/adolescents, pediatric patients, pregnant women and HIV patients who are displaced by natural disasters.
The webpage listing the guidelines now says they are 'being updated to comply with Executive Orders,' raising the question of whether sections dealing with care for transgender people with HIV may be changed or eliminated.
The letter sent to panel members did not say specifically if or how the clinical practice guidelines might change, only that 'Together, we now have an opportunity to develop a proactive, careful transition plan for each Panel.' The letter noted that 'a special session on guidelines sustainability planning' has been scheduled for Thursday with panel leadership and the Office of AIDS Research Advisory Council.
Officials at NIH referred questions to the Department of Health and Human Services, which did not respond to emails requesting clarification of the letter.
Kennedy has long espoused controversial views about HIV, suggesting that contrary to widely held medical belief, the virus was not the cause of AIDS. In a video posted on Twitter in 2023, Kennedy tells an audience, 'A hundred percent of the people who died at first, the first thousand who had AIDS, were people who were addicted to [a class of drugs called] poppers. … They were people who were part of a gay lifestyle. They were burning the candle at both ends, and they were taking a lot of injectable drugs.'
Under Kennedy, HHS has terminated hundreds of millions of dollars in HIV-related research grants. The department closed its Office of Infectious Diseases & HIV Policy that coordinated the federal response to the virus. At the same time, 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.
'These guidelines serve as a reference for the world in addition to caring for people in the U.S.,' said Theodore Ruel, chief of the Division of Pediatric Infectious Diseases and Global Health at UCSF Benioff Children's Hospital, and co-chair of one of the panels responsible for the guidelines.
'It is disappointing that such a key guideline about HIV for children in the USA will no longer be supported by the NIH,' said Ruel — whose panel examines antiretroviral therapy for the medical management of children living with HIV — stressing that he was not speaking for the other panelists. 'I am concerned that we are unlikely to find a new home that can maintain the same depth, quality, access and capacity for real-time updating.'
He expressed faith that the panelists would push to find a home for the guidelines where they can continue to offer 'science-driven support' for doctors and patients.
James M. Sosman, medical director for UW Health's HIV Care and Prevention Program, who has been caring for people with the disease for decades, said that having the guidelines under the auspices of the Office of AIDS Research made sense.
'Would I look to move that? I'm reluctant because it's like, 'Hey, if you've got a guy that's hitting home runs at third base, don't move them to first base,'' Sosman said. 'I mean if it's working out, why are you disrupting this for costs that don't seem that great.'
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