Turmoil, uncertainty at RFK Jr.’s CDC leaves those suffering from 9/11 illnesses fearful

Turmoil and a lack of communication at the U.S. Centers for Disease Control and Prevention, led by President Trump’s Health and Human Services Secretary Robert Kennedy, has left 9/11 advocates in the dark about the future of the World Trade Center Health Program and concerned about the first responders and survivors it’s designed to help.

Since Kennedy took over HHS, 9/11 advocate groups haven’t been able to officially speak with anyone to learn if the WTC Health Program has verified any of the new medical conditions linked to the toxins that swirled above Ground Zero following the terror attacks or if any studies are being conducted on new maladies 9/11 sufferers are facing.

A steering committee had met nearly every month for 24 years to discuss health issues facing 9/11 responders and survivors until Kennedy took over, said Ben Chevat, the executive director of the 9/11 Health Watch. Chevat’s invitations to WTC Health Program members to attend the meetings have been met with a curt response, indicating that the HHS has “issued a pause on mass communications and public appearances that are not directly related to emergencies or critical to preserving health.”

“Under Secretary Kennedy, the needs of 9/11 responders and survivors in the WTC Health Program are still not being fully met, Chevat said  “With new rare medical conditions cropping up within the 9/11 survivor community, open communication with the WTC Health Program is more important than ever, he said.

“This pause has shut down all normal communications between the 9/11 community and the World Trade Center Health Program, and is impacting the program’s normal functioning,” he added. “Given that it is now more than eight months since the new administration took over, it is long past time to remove the ban on the program interacting with the 9/11 community.”

In July and August, the WTC Health Program sent a new email about the steering committee, stating the feds wouldn’t be attending as “we continue a temporary hiatus” on public and external meetings. The feds did say in he emails they expect to “rejoin these meetings” in the fall.

Tens of thousands of responders and survivors rely on the WTC Health Program to get treatment and medication and monitor injuries and illnesses caused by the toxins kicked up into the air on 9/11 and the weeks that followed.

“With every passing month, our list of police officers who have succumbed to 9/11-related illness grows longer,” said New York City Police Benevolent Association President Patrick Hendry. His union regularly attends the steering committee meetings.

“There is simply no time to waste in ensuring that these heroes receive the treatment they deserve. We continue to urge our federal partners to resume meeting with the steering committee without further delay.”

In recent years, more and more 9/11 first responders and survivors have come down with rare kidney and blood diseases — some of which “have only been reported 100 times in the literature in the world,” Chevat said. Since the beginning of the Trump administration, the CDC “still has not made a decision on the petitions that are pending to add autoimmune, cardiac or cognitive conditions to the list of the program’s certified conditions,” he added.

Advocates, for example, have learned that 24 out of 55,000 survivors monitored have been diagnosed with Berger’s Disease, which damages the kidneys. The number is startling since only 1.4 per 100,000 people in the U.S. historically come down with the disease.

The WTC Health Program needs to do a study to see if more survivors have this condition and if it should be made a certified 9/11 illness, Chevat said.

Drastic cuts to the WTC Health Program personnel, as well as the firing of program head Dr. John Howard were reversed earlier this year after lawmakers from both sides of the aisle sounded the alarm.

The rare reversal from Trump in February saw him restore two research grants and the jobs of 16 employees.

Yet a hiring freeze at the WTC Health Program remains in place, advocates said. A research grant program to identify and study new health conditions linked to 9/11 toxin exposure within the agency has also ground to a halt with the WTC Health Program not sharing the award status with the doctors and scientists who submitted them, they say.

An email to the HHS regarding these concerns was not immediately returned.

“The Trump administration’s actions — including attempts to fire program staff, limit program communication, and delay work related to contract renewal for critical program components — deliberately inhibit the program’s ability to function properly and undermine care for program enrollees,” Sen. Kirstin Gillibrand (D-NY) said about the ongoing quagmire.

“I will continue pushing for Secretary Kennedy to fix these administrative issues, and I will never stop fighting to provide permanent funding for this crucial program.”

In a letter that both Gillibrand and Sen. Charles Schumer wrote on Aug. 5, the two noted that the WTC Health Program’s support contracts for doctors and pharmacists “will soon be up for renewal.”

“As far as we know, there is no staff available to work on updating requirements and requests for proposals and there is insufficient staff to do the ongoing contract approvals the current contracts require,” the senators wrote. “Unless this contract work can occur in a timely fashion, clinical care will be further impacted because providers will not be paid and medications will not be filled.”

It’s estimated that more than 400,000 people were affected by the toxins swirling over Ground Zero. More than 140,000 people have been enrolled in the WTC Health Program.

Of that number, more than 81,000 have at least one certified 9/11 illness from their exposure during and after the terror attacks on the World Trade Center, as well as the hijacked plane crashes near Shanksville, Pa., and at the Pentagon, according to the program’s website.

In a post Thursday on X, Kennedy honored “the nearly 3,000 lives lost, the courage of those who ran toward danger, and the unity that carried us through” on 9/11.

“@POTUS and I will ensure the HHS World Trade Center Health Program continues to serve our 9/11 heroes-firefighters, police, cleanup crews, survivors, and Pentagon workers,” he vowed. “We will never forget.”

With David Goldiner

Originally Published: September 11, 2025 at 6:00 AM EDT