An ongoing dialogue on HIV/AIDS, infectious diseases,
June 20th, 2025
Federal HIV Guidelines Face a Shutdown — A Critical Loss for Clinicians and Patients
Each week, our HIV clinical group gathers to review active patients, share updates, and celebrate good news. On our whiteboard, we list four columns: Inpatients, Outpatients, Issues, and Celebrations.
This week, under “Issues,” one of my colleagues wrote:
HIV Guidelines: ☹️
Yes, you read that right. This week, we learned that the federal HIV guidelines — long the most cited national standard for clinical care — may soon lose NIH support. Here’s what the official letter said, shared with me by a current panel member:
After careful consideration, leadership at the National Institutes of Health (NIH) has determined that NIH support provided by the Office of AIDS Research (OAR) for the HIV clinical practice guidelines will phase out by June 2026. 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 the U.S. Department of Health and Human Services (HHS).
The key phrase here is “in the climate of budget decreases and revised priorities,” which basically means someone has decided that the national standards for HIV treatment aren’t worth spending money on. Let’s think about this for a nanosecond — how much money is this really saving anyone?
And the “options to transfer management of the guidelines to another agency” face big-time challenges. I have it on good authority from people at HHS that it is highly unlikely any existing agency has the available time or expertise to take it on.
Meanwhile, it’s worth reviewing just how valuable these guidelines have been in establishing an informed, evidence-based standard for HIV care in our country. A historical perspective with some notable milestones:
- First OI prophylaxis recommendation (TMP-SMX for PCP)
- First perinatal guidelines, post-ACTG 076
- First ART guidance responding to the era of combination therapy
And they’ve kept going. Responding quickly to practice-changing studies, these guidelines have truly been a “living document,” publishing updates on a regular basis in a way that would be impossible for most journals.
A disclosure: I contributed to the Opportunistic Infections Guidelines (Bacterial and Respiratory working group) and served on the HIV treatment panel from 2008 to 2016. What impressed me most was the care, rigor, and collegiality of the process. Every recommendation was debated, refined, and re-reviewed, always with the goal of helping clinicians deliver the best possible care.
(For the cynics: Panel members volunteered their time. Translation — we were unpaid.)
The NIH staff overseeing the process had deep expertise in the field and kept the process moving along with an uncanny ability to attend to multiple voices. Plus, they were meticulous about details in a way that card-carrying ID types like me find very reassuring. Remember, many of us exhibit a clinical form of OCD that translates into our history taking and notes. Just the other day, I read a colleague’s note that started with the word “briefly” — and then went on for a thousand words, give or take.
Another disclosure: I now participate in another guidelines group, headed by the IAS-USA. In doing so, one might ask why have two existing sets of guidelines? I’d argue that having alternative voices in this process — one that includes international contributions — enhances the usefulness of both guidelines.
It’s not clear what will happen to the federal HIV guidelines going forward. A discussion about the “transfer” options is planned during an upcoming Office of AIDS Research meeting on June 26. The guidelines discussion will start around 2:15 p.m. ET, with the public comment period scheduled for 3:25 p.m. ET. If you think the guidelines have been important, and worth saving, I encourage you to provide public comment, or email OARACinfo@nih.gov directly.
Now back to the frowny face emoji at the top of this post. I can’t help but connect this decision to another recent action: the abrupt firing of ACIP members. Both seem to reflect the same troubling sentiment we heard not long ago from the current HHS leadership — a desire to “give infectious diseases a break for eight years.”
Why should that break include eliminating something that works this well, and that clinicians actually use? Frustrating.
For the record, if you’re wondering what landed in the “Celebrations” column on our whiteboard this week — it was the graduation of our ID fellows.
Here are two of our stellar grads, making me optimistic about the future of infectious diseases, “break” or no “break.” Congratulations, Cesar and Gaby! And thank you for sharing the photo.
Me with two future ID clinical leaders; photo posted with permission. (I’m the old guy in the middle.)
4 Responses to “Federal HIV Guidelines Face a Shutdown — A Critical Loss for Clinicians and Patients”
Leave a Reply
Paul E. Sax, MD
Contributing Editor
NEJM Journal Watch
Infectious Diseases
Biography | Disclosures | Summaries
Learn more about HIV and ID Observations.
NEJM Journal Watch — Recent Infectious Disease Articles- Observations from ID and Beyond: Why the Sudden Firing of ACIP Members Should Put Every Clinician on High Alert
- Does HIV RNA Testing to Monitor PrEP Add Value?
- New CDC Guidelines for HIV Nonoccupational Postexposure Prophylaxis
- Observations from ID and Beyond: How ID Doctors Get Paid, Part 3: The Grab Bag Edition
- Histoplasmosis and HIV in Sub-Saharan Africa
What a great summary
Thanks for being such an effective communcicator
Thanks Paul for yet more bad news that will impact our colleagues who provide HIV care and our patients who have benefited. I will pass on to AAHIVM members and this to our lists of action items requiring our attention….the list sadly keeps growing.
With all that’s on your plate, I don’t know where you find the time to write such clear and informative posts, but I’m glad you keep doing it.
Beautiful pic!
This is so sad and completely unnecessary. I was the NIH staff person for the perinatal and pediatric HIV guidelines starting in the 1990’s. The initial perinatal guidelines in 1994 following the PACTG 076 trial resulted in a 65% decrease in perinatal HIV transmission in the United States in 3 years, an 88% decrease within 10 years, and with updated perinatal guidelines, a 97% reduction between 1994 and 2013 – perinatal transmission in the United States is under 1%, from 30% prior to 076. And with pediatric ARV guidelines, we went from 50% mortality in children infected with HIV by age 2 years in the early 1990’s, to “children” with HIV now becoming young adults and having children of their own (uninfected children). The ability of these guidelines to be rapidly updated have saved numerous lives. One wonders about the true “pro-life” and “pro-family” claims of the current administration.