As 9/11 milestone nears, CDC head says duty to care for sick first responders will continue

The new head of the Centers for Disease Control and Prevention in a speech Thursday said she recognized the agency has "a profound and continuing responsibility" to care for the 9/11 survivor community as cancers and other illnesses continue to afflict those exposed to toxic air 25 years ago in the Sept. 11, 2001, terrorist attacks.

Dr. Erica Schwartz, addressing a conference at the Icahn School of Medicine at Mount Sinai, said the federal World Trade Center Health Program, fully funded through 2090, needs to ensure "responders and survivors continue to receive the monitoring, specialized care and support they deserve." The conference also featured Long Islanders who fought for the program's creation 16 years ago. 

Her pledge comes as the program has grappled with a turbulent period in President Donald Trump’s second term. The program’s administrator, Dr. John Howard, was fired as part of the Trump administration's widespread federal government layoffs, only to be reinstated weeks later under pressure from New York lawmakers and advocates. The program has also been operating with about 30 fewer employees due to a combination of layoffs, buyouts and vacancies, raising concerns by advocates that the shortage has stalled research and led to delays in the approval of coverage for new diseases that continue to emerge.

The U.S. Department of Health and Human Services, under pressure from New York members of Congress from both parties, has said it is working to fill the vacancies.

"Sept. 11th also taught us that national preparedness does not end when the immediate crisis does," Schwartz said. "It means following health effects over time, sustaining research, listening to affected communities and adapting as the science and people's needs change. This community has shown us that readiness is not just about responding when a crisis begins; it's about staying committed through everything that follows."

Thursday’s conference, tied to the anniversary of the attacks, featured a number of speakers from Long Island who advocated for the creation of the program that currently serves about 150,000 people made sick through their exposure to the attack sites at the World Trade Center, the Pentagon and in Shanksville, Pennsylvania.

Dr. Benjamin Luft, medical director of Stony Brook University’s World Trade Center Health Program Clinical Center of Excellence, speaking on a panel about the illnesses that continue to emerge among the survivor community, said a 10-year study at the center has tracked an increase in cognitive decline among the community.

"We have begun to see something deeply concerning — cognitive impairment in responders at ages when we should not," Luft said. "That raises a much larger question: Did the events of 9/11, through a combination of neurotoxic exposure, psychological trauma and subsequent biological changes, alter the trajectory of brain aging?"

Luft and researchers at Stony Brook have been petitioning the federal government to approve cognitive decline as a condition covered by the program and are awaiting a response.

"Our responsibility is to recognize cognitive change early and to identify those of greatest risk before the impairment becomes irreversible," Luft said.

Dr. Jacqueline Moline, a senior vice president at Northwell Health’s World Trade Center Health Program Clinical Center of Excellence, said those on hand have a responsibility "to make sure that people continue to understand that this is a problem that isn't going to go away; we're going to continue to see more issues." This includes, she said, not only aging first responders and recovery workers but also younger victims now in their 30s and 40s who are recognizing their health issues may be tied to their exposure to the toxic air around lower Manhattan at the time.

Panelists recalled the hard-fought battles to get the program established and funded and also took note of the pressing fights ahead, including expanding the list of diseases covered by the program to include more of the cardiac, cognitive and autoimmune diseases that keep cropping up.

"If you're not outraged, then you're not human," said John Feal, a longtime 9/11 advocate from Nesconset, about the fight to get more diseases covered.

Earlier in the event, the CDC's Schwartz said: "When new evidence emerges, we have a responsibility to consider it seriously."

In a brief interview with Newsday in between panels, Rear Adm. Lisa Delaney, director of the World Trade Center Health Program, said the program is "evolving with our members to meet their needs."

"We’re not pumping the brakes on this program," Delaney said when asked about her expectations for the program as the nation marks another milestone anniversary of the attacks.

Former Long Island Rep. Peter King, a Seaford Republican and a conference panelist,  said that "it is really important that we never forget 9/11, and also the progress that's made since then, but how more progress is necessary."