More vulnerable to health threats

‘We are flying blind’: RFK Jr.’s cuts halt data collection on abortion, cancer, HIV and more

Fired workers and outside experts say the cuts leave the nation more vulnerable to health threats.

By Alice Miranda Ollstein

The federal teams that count public health problems are disappearing — putting efforts to solve those problems in jeopardy.

Health Secretary Robert F. Kennedy Jr.’s purge of tens of thousands of federal workers has halted efforts to collect data on everything from cancer rates in firefighters to mother-to-baby transmission of HIV and syphilis to outbreaks of drug-resistant gonorrhea to cases of carbon monoxide poisoning.

The cuts threaten to obscure the severity of pressing health threats and whether they’re getting better or worse, leaving officials clueless on how to respond. They could also make it difficult, if not impossible, to assess the impact of the administration’s spending and policies. Both outside experts and impacted employees argue the layoffs will cost the government more money in the long run by eliminating information on whether programs are effective or wasteful, and by allowing preventable problems to fester.

“Surveillance capabilities are crucial for identifying emerging health issues, directing resources efficiently, and evaluating the effectiveness of existing policies,” said Jerome Adams, who served as surgeon general in the first Trump’s administration. “Without robust data and surveillance systems, we cannot accurately assess whether we are truly making America healthier.”

The offices that ran the Sickle Cell Data Collection Program, the National Intimate Partner and Sexual Violence Survey, the Pregnancy Risk Assessment Monitoring System and the National Firefighter Registry for Cancer were scrapped. So were teams that reported how many abortions are performed nationwide, the levels of lead in childrens’ blood, alcohol-related deaths, asthma rates, exposures to radon and other dangerous chemicals, how many people with HIV are taking medication to suppress the virus, and how many people who use injectable drugs contract infectious diseases.

Despite Kennedy’s promise of “radical transparency” at HHS and his insistence that Americans will make better health choices with access to more data, nine federal employees laid off or put on administrative leave over the last two weeks told POLITICO the cuts mean data won’t be collected — or if still collected by states, won’t be compiled and made public — on issues that officials across the political spectrum have said are priorities. While data from past years remains available online, future updates are in jeopardy if the cuts are not reversed, they said.

Andrew Nixon, an HHS spokesperson, did not dispute the numerous cuts to data collection teams, but said in a statement that “CDC is actively working to ensure continuity of operations during the reorganization period and remains committed to ensuring critical programs and surveys continue.”

Yet every employee POLITICO interviewed who received a “reduction in force” notice said they were not given an opportunity to hand their data-gathering work to another team or told who, if anyone, would carry it forward. And while some workers are holding out hope of being called back from administrative leave in the coming weeks, none so far have received communication from their managers to that effect.

“There was no plan in place to sunset any of it, or to transfer our expertise over to someone else or to train folks,” said an employee at the CDC’s Division of Reproductive Health who was eliminated and was granted anonymity to speak candidly about the impact of the cuts. “Even if you’re folding in some personnel, all of our team’s work has essentially been eliminated overnight.”

‘We are flying blind’

Among the offices shuttered by the layoffs is the CDC’s Atlanta-based lab that analyzes samples of sexually transmitted infections from around the country, helping state and local public health workers know where an outbreak is happening, how many people are infected, where it started, and how to stop it from spreading.

“Missing that expertise and that connection between laboratory information and outbreak investigation means we are flying blind,” said Scott Becker, the CEO of the Association of Public Health Laboratories. “The critical services that they provide to public health labs in the country that are really not replicated anywhere else.”

The lab is one of only three in the world, and the only one in the U.S., with the ability to test for emergent strains of “super gonorrhea” that are impervious to most antibiotics — something the Biden administration deemed an “urgent public health threat” last year.

The layoffs have also stymied work on issues President Donald Trump has personally championed — including halting HIV transmission and improving access to IVF.

Despite Trump declaring himself the “father of fertilization” on the campaign trail and signing an executive order in February directing federal officials to look for ways to make IVF and other assisted reproductive technologies better and more affordable, Kennedy eliminated the six-person team that ran the National ART Surveillance System, a congressionally-mandated project that tracked and publicized the pregnancy success rates of every fertility clinic in the country.

“The data is like consumer protection information for fertility patients,” said one of the workers, granted anonymity for fear of retaliation. “We were putting any information out there that we could that was helpful for couples that are going to spend tens of thousands of dollars investing in what they hope will end up to be a healthy baby.”

The person added that their team was in the middle of compiling the most recent data — from 2023 — when it was put on administrative leave and locked out of emails and offices. As use of IVF has exploded in recent years with few regulations, the team’s past reports have helped push the medical community to adopt safer and more effective IVF methods, such as transferring just one embryo at a time instead of several.

HIV data cuts pose ‘big danger’

Data collection on HIV was hit particularly hard by the cuts, according to three officials who received “reduction in force” notices.

The behavioral and clinical surveillance branch of the CDC’s office that focuses on HIV was eliminated, leaving the fate of several data gathering projects up in the air. Those include studies on how many people with HIV are receiving adequate treatment, which behaviors put people at highest risk for contracting HIV and which testing and prevention programs are most effective, how many people have undiagnosed HIV, and the links between substance abuse and HIV transmission.

“If you don’t understand what are the needs for HIV prevention, then you don’t understand what types of services to provide or how to direct those services to reach the greatest number of people,” said an employee of one of the CDC’s eliminated HIV branches, granted anonymity to avoid retaliation. “That’s the big danger.”

For some projects, state health departments and health care providers will continue to gather data and send it to federal agencies — but there is no one left to compile, analyze and disseminate it.

Also scrapped were those who dug into the forces behind the data. While the government will still count how many infants are born with HIV and syphilis, for example, the team investigating those infections has been cut — even as cases of congenital syphilis, a preventable infection that can be lethal if untreated, climb to the highest level in decades.

“We would review cases, interview mothers, and identify local systems issues and failures,” another employee of the Division of HIV Prevention impacted by the RIF told POLITICO. “Little of that is going to move forward now that we’re gone.”

‘We’ve broken that line’

CDC teams focused on violence and injury prevention were eliminated, leaving no one to run the Web-based Injury Statistics Query and Reporting System, known as WISQARS, and the Wide-ranging Online Data for Epidemiologic Research, known as WONDER. Sharon Gilmartin, the executive director at the nonpartisan nonprofit public health group Safe States Alliance, said state and local officials depend on both databases to suss out where and how Americans are dying, and there is widespread “anxiety and fear” about that information not being updated going forward.

“It tells us where fatalities are increasing, where there are hot spots that we need to pay attention to, and what efforts are working,” she said. “It’s a misnomer that this is bureaucratic streamlining and we’re just getting rid of a bloated workforce. There was a very direct line between the federal workforce and the work in states and communities, and now we’ve broken that line.”

The cuts have also claimed the team at the National Institute for Occupational Safety and Health (NIOSH) that ran the National Firefighter Registry for Cancer. While data from past years are still available online the link for firefighters to submit their own information for the registry leads to an error page. Also halted was a study on firefighters’ exposure to carcinogens during electric vehicle fires.

“We cannot collect any additional data,” said Micah Niemeier-Walsh, the vice president of a local union affiliate that represents workers in NIOSH’s Cincinnati’s office, including those who worked on the firefighter registry. “This is a congressionally mandated program that Trump himself signed into law in 2018, and we were researching what leads to elevated cancer rates in firefighters and how to reduce them.”

And despite a push by conservatives — including the authors of the Heritage Foundation’s Project 2025 blueprint — for the federal government to gather more data on how many women are getting abortions, where, and with what methods, the CDC’s team that has compiled and published that information for the last half century was eliminated. A former member of the team said they were in the middle of crunching the 2023 numbers — the first full year after the Supreme Court overturned Roe v. Wade — when they received reduction in force notices, leaving that data “sitting in inboxes and Teams folders” that the laid off staff can no longer access and making it harder to assess the impact of state bans on the procedure.

The entire team that ran the CDC’s Pregnancy Risk Assessment Monitoring System, known as PRAMS, was also cut, putting in jeopardy the long running database on the health of new moms and their infants.

A CDC epidemiologist who worked on the program, stationed in a state far from the agency’s Atlanta headquarters, told POLITICO they were tracking everything from how many new parents put their babies to sleep in ways that raise the risk for Sudden Infant Death Syndrome, how many smoke around their babies, and how many moms suffer from postpartum depression or anxiety.

“[These cuts are coming] from a party that claims to be pro-family and pro-life,” the worker said. “But if you’re not getting these data, you don’t really know how moms and babies and families are doing during a really important time in their lives.”