After being shut down “indefinitely” at the start of April, the National Firefighter Registry for Cancer could soon be operational again. The registry is considered by many to be one of the largest and most promising efforts to further understand cancer risks among firefighters, including wildland firefighters.
All NFR staff who were affected by massive reductions in force at the U.S. Department of Health and Human Services have been reinstated, someone familiar with the program told the Mountain West News Bureau. The registration website is also again accessible. The NFR is run by the Center for Disease Control and Prevention’s National Institute for Occupational Safety and Health (NIOSH), both of which are under HHS.
A copy of one of the messages sent to affected NIOSH staff shared with the bureau reads: “You previously received a notice regarding (HHS’) upcoming reduction in force (RIF). That notice is hereby revoked. You will not be affected by the upcoming RIF.”
In response to questions about the status of the registry, a department spokesperson said that HHS Sec. Robert F. Kennedy Jr. has “emphasized the courage and selflessness of firefighters, who embody the principle that public service is the highest calling.”
“Ensuring their health and safety remains a top priority for HHS,” the emailed statement read. “As the agency streamlines its operations, the essential services for these Americans provided by NIOSH will continue.”
The statement did not mention the cancer registry by name, or respond to questions regarding how many of its staff were being brought back. However, in late April, the International Association of Fire Fighters said that its leadership had met directly with Kennedy about the registry, as well as the Fire Fighter Fatality Investigation and Prevention Program and the World Trade Center Health Program.
“Following direct talks with Health and Human Services Secretary Robert F. Kennedy Jr., these key NIOSH programs – initially disrupted due to a misinterpreted executive order – are being restored this week,” the April 29 statement read.
“It was explained to me that the Reduction in Force ordered by a White House Executive Order was misinterpreted by ‘mid-level bureaucrats,’ and our programs – which Secretary Kennedy assured me were ‘critical’ – would continue,” IAFF General President Edward Kelly said in the same release. “Secretary Kennedy and I also discussed meaningful ways to improve the programs to better serve our members.”
After showing error messages since early April, it was possible to visit the National Firefighter Registry for Cancer enrollment page as of Wednesday afternoon.
“While I'm extremely happy to return to my job with the NFR team, the union is determined to continue to advocate for full reinstatement of all NIOSH employees,” said Micah Niemeier-Walsh, vice president of American Federation of Government Employees Local 3840, which represents NIOSH employees in Cincinnati. “All NIOSH programs are important for the health and safety of working people in this country."
Last month, ProPublica reported that at least two-thirds of NIOSH staff were laid off in April, or would be in June. NIOSH does a wide range of safety work, like certifying respirators and training doctors to test miners for black lung disease. It even identified a new lung disease among workers at microwave popcorn factories, according to the Associated Press.
Sara Jahnke, director of the Kansas-based not-for-profit Center for Fire Rescue & EMS Health Research, said news of the cancer registry reinstatements gave her a “huge, huge sense of relief.”
“The (registry) is the only way we'll get some of the answers, particularly for underrepresented groups in the fire service,” she said of the significance of the effort. Those groups include women, racial and ethnic minorities, as well as wildland firefighters.
An cancer registry data dashboard shows that nearly 24,000 current or former firefighters had registered through the end of March, including this reporter. Of them, nearly 10%. are women, and 17.5% had at least some wildland fire experience.
A high-level CDC official previously told the Mountain West News Bureau that “we … know probably the least amount about wildland firefighters’ risk of cancer.”
“I think the NFR was positioned to really help bridge that gap and improve our understanding of all firefighters' risk of cancer, but I think especially for wildland firefighters,” they said in April. “We know so little, and I think we could have learned a lot, and still can if the NFR is restored.”
But even with the cancer registry seemingly on the cusp of restarting, Jahnke – who served on a subcommittee that helped set it up – is still worried. She said the program is “not a switch: It can't just be turned off and on.”
“I have some real concerns about the mental health of the folks who are on this roller coaster and watching things that they've spent their careers building being torn apart and then being told, ‘Oh yeah, just a mistake,’” she said.
Enrollment had been picking up steam in recent months — the fruit, Janhke said, of trust building between NIOSH staff and firefighters across the country.
“I think there's real concern right now about what happens to your data when you give it to the government,” she said, adding: “this has done some damage. It's going to take some work to rebuild.”
But it’s important that that work be done, she argued, because of the the registry’s potential impacts.
“If it's predictable, it's preventable,” she said. “It's only predictable if you have the data to be able to predict it.”
This story was produced by the Mountain West News Bureau, a collaboration between Wyoming Public Media, Nevada Public Radio, Boise State Public Radio in Idaho, KUNR in Nevada, KUNC in Colorado and KANW in New Mexico, with support from affiliate stations across the region. Funding for the Mountain West News Bureau is provided in part by the Corporation for Public Broadcasting.
