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.”
n 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.