WASHINGTON — For the past 24 years a panel of doctors, union leaders and advocates met monthly with federal health officials to address the mounting health concerns surrounding 9/11 first responders and survivors.
The meetings of the World Trade Center Responder Steering Committee were described by attendees as collaborative and cordial — until they came to an abrupt stop this year.
Committee members and other 9/11 survivor advocates told Newsday they are growing increasingly concerned that the pause in meetings is preventing the group from examining the emergence of rare diseases reported by a number of survivors. The group has been stymied for eight months by a Trump Administration policy that has kept administrators of the federal World Trade Center Health Program from meeting with the group, according to emails reviewed by Newsday.
The committee has not met since January and its members, including representatives of New York City’s firefighter and police unions, have not been able to resume long-standing discussions with federal health officials about the tracking of rare diseases cropping up among some 9/11 survivors.
The "committee had met nearly every month for 24 years working to respond to the health issues facing sick and injured 9/11 responders from their exposure to toxins at Ground Zero, that is until Secretary [Robert F.] Kennedy took over" the Department of Health and Human Services, said Ben Chevat, director of 9/11 Health Watch, a group that advocates on behalf of those exposed to toxins at the attack sites in lower Manhattan, the Pentagon, and Shanksville, Pa.
Emails reviewed by Newsday show that every month from February to August, federal officials advised the group that the program’s officials could not participate in the meetings citing a "temporary" policy prohibiting Health and Human Services officials from public appearances that are not related to emergencies.
The Department of Health and Human Services did not respond to Newsday’s request for comment, but agency officials have publicly maintained that the communications pause ended in February.
Members of the committee dispute the agency’s response, and say they are growing increasingly frustrated that months have passed without a meeting, particularly as the nation approaches another anniversary of the 2001 attack.
"With every passing month, our list of police officers who have succumbed to 9/11-related illness grows longer," New York City Police Benevolent Association President Patrick Hendry said in a statement to Newsday. "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."
The committee started as an ad hoc panel in the weeks after the Sept. 11 terrorist attacks as first responders and recovery workers raised concerns about exposure to toxic air and dust.
In 2010, the James Zadroga 9/11 Health and Compensation Act set up the health program to provide a coordinated response to the growing number of survivors grappling with serious illnesses. The act also formalized the committee's role, stating that the health program's administrator should consult with the panel, and tasked the panel with coordinating "monitoring and treatment programs."
Chevat said the pause on meetings has prevented at least one first responder from Nassau County from enrolling in the World Trade Center Health Program as she seeks to get her rare blood disease added to the list of diseases it covers.
Allison Beyerlein, a former Nassau County Police Officer, spent 17-hour days near Ground Zero after the attacks.
An avid cyclist, and someone who prided herself on a healthy lifestyle, Beyerlein said routine blood work three years ago revealed that she had dangerously low levels of blood platelets, and she was ultimately diagnosed with a rare blood disorder that makes even a small cut potentially lethal.
Her doctors believe the condition — AAT or Acquired Amegakaryocytic Thrombocytopenia — is tied to her time patrolling lower Manhattan, because medical studies have shown there is a link between the disease and exposure to high levels of chemicals like benzene, a toxin that was later detected in the air surrounding Ground Zero.
Since AAT is not on a list of federally approved conditions used to admit patients into the World Trade Center Health Program, Beyerlein has to wait for her condition to be certified by the federal government and added to the list. The steering committee had been urging program officials to take a closer look at AAT and whether there are other cases among the 9/11 survivor community.
"Even the doctors who are doing my physical are asking ‘how are you not covered?’ " Beyerlein, 61, said in a phone interview. "I'm fighting so hard for something I feel like I shouldn't have to be fighting this hard for."
In August, Sens. Kirsten Gillibrand and Chuck Schumer wrote a letter to HHS Secretary Kennedy raising concerns about the pause in communication between federal officials and the steering committee, but they have not heard back, according to Gillibrand’s office.
Rep. Andrew Garbarino (R- Bayport), the new chairman of the House Homeland Security Committee, told Newsday in a phone interview that he has also reached out to HHS officials. "We are trying to find out where the disconnect is," Garbarino said.
Advocates and enrollees in the program told Newsday they are concerned that the pledges of "Never Forget" following the attacks are slowly fading away.
Any interruptions in getting individuals certified and enrolled in the program "can make the difference between life and death," said 9/11 legal advocate Michael Barasch, whose firm Barasch & McGarry represents more than 40,000 survivors and first responders in the 9/11 community.
"There's chaos right now at the [Centers for Disease Control] and the [National Institute for Occupational Safety and Health]. Nobody knows what's going on," Barasch said, referring to cuts at agencies that work in coordination with the World Trade Center Health Program. "And the frustrating thing, frankly, is that Secretary Kennedy has ordered a communications blackout so we can't get any information."
Dominic D'Amico, 72, of St. James, was the manager of an electric and telecommunications firm that helped set up communication systems for first responders and recovery workers to use in lower Manhattan. He has since been diagnosed with breast cancer tied to his work in the area, and started receiving treatments from the World Trade Center Health Program eight years ago.
D’Amico told Newsday he hopes the work of the program can continue unimpeded.
"There were so many volunteers who gave of themselves, who responded to the call, no questions asked, it doesn’t make sense not to protect this program," D’Amico said.
Robin Jody Cohen, 70, of Long Beach, was working as a hospital administrator at New York Downtown Hospital, just blocks away from the Twin Towers, on the morning of the attacks. She recalls helping soot-covered pedestrians as they rushed into the hospital looking to escape the smoke and falling debris.
"I remember breathing in the dust when it came in through the ER ... it felt like chipped glass going in your throat," Cohen said in a phone interview.
Eight years ago she was diagnosed with skin cancer, which her doctors believe is tied to the attacks. She is enrolled in the World Trade Center Health Program, and said she hopes the federal government keeps its commitment to aid those still grappling with diseases from their exposure to the attack sites.
"This was a terrorist attack on the country," Cohen said. "Any citizen that was affected by that needs to be taken care of. The bottom line is you have to take care of your people."