Dozens of HIV experts at the Centers for Disease Control and Prevention (CDC) received emails in June revoking notices they received months before that laid them off. Damage to their projects may be permanent, however, and ongoing restrictions on their research will harm lives, multiple HIV scientists at the CDC told KFF Health News on condition of anonymity because of fears of retaliation.

 

The researchers were laid off in early April, just before they put the finishing touches on in-depth, national surveys about HIV. Health officials across the country had interviewed tens of thousands of people at risk of acquiring HIV, or who are living with the virus, and compiled information from mountains of medical records.

 

States and cities were prepared to submit the information they collected to the CDC in April so the agency’s statisticians could prepare the volumes of data for analysis.

 

Health officials and policymakers use the data to design HIV programs that more efficiently curb the spread of infections and save lives. For example, a 2023 survey revealed that about half of adults under age 30 who were living with HIV weren’t on treatment steadily enough to keep them healthy and prevent them from spreading the virus to others. Treatment rates were far higher for those over 50. As a result, health officials doubled down on outreach to younger generations.

 

However, in April, state and local health officials found themselves cut off from their CDC counterparts after the layoffs. Emails from the Department of Health and Human Services (HHS) told staff their roles were “either unnecessary or virtually identical to duties being performed elsewhere in the agency.”

 

Marti Merritt, a project coordinator at the Illinois state health department, was flabbergasted that she and other state employees had invested more than a year into the surveys only to have them go dark in the final phase. “It’s like the data has gone into a black hole,” she said. “How do you set priorities if you don’t have data?”

 

Merritt worries that if the surveys don’t resume, limited budgets will be misspent—and that cases will rise. Data allows health departments to tailor their efforts to the populations at greatest risk of infection or disease progression.

 

Evidence shows that preventing HIV is far cheaper than treating people once they have the virus. Preventing one HIV infection results in $466,000 in lifetime savings. Merritt was also dismayed to have wasted the time of thousands of people who opened up about intimate details of their lives in hopes of fighting the HIV epidemic.

 

A doctor and HIV expert reinstated at the CDC said the late termination of the surveys would waste millions of taxpayer dollars that have already been spent on data collection. Two large, long-standing efforts, the Medical Monitoring Project and the National HIV Behavioral Surveillance system, cost around $72 million, he said.

 

“Two years’ worth of data from 30,000 participants will be unusable, and therefore wasted,” if the projects can’t be finished, he said.

 

To resume the surveys, he and other CDC researchers would need a green light from higher up because the grants covering these surveys ended while they were on administrative leave in May.

 

State health officials said they haven’t received the CDC notices that typically renew the surveys every June. Merritt has conducted interviews for the Medical Monitoring Project for about 20 years, she said, but the Illinois health department has now assigned her to other tasks. Other health departments have also laid off or reassigned employees dedicated to HIV.

 

If HHS allows the reinstated researchers to resume the projects, they could try to account for the 10-week gap in their analysis. But it would take time, further delaying the next round of surveys—if those begin at all.