WTC health advocates point to delays in getting new conditions covered

WASHINGTON — Michael Gayson, of Williston Park, was two years into his retirement as an FDNY firefighter when the Sept. 11, 2001, attacks happened. 

His wife said he couldn’t bear to sit and watch the scenes of devastation on television. So he dusted off his old gear and headed to lower Manhattan nearly a dozen times to help with the recovery effort.

Donna Gayson, a retired physician assistant, worried about the effects the soot and dusty air would have on her husband's health.

"There's nothing I could do to hold him back," she told Newsday in a phone interview. "And I would have if I could have, because I knew as a physician assistant that all those people working down there were not going to be OK."

Nearly 25 years after the attacks, she is now her 78-year-old husband’s full-time caretaker as he grapples with dementia — a decline in his memory and cognitive abilities that started in his late 50s. Researchers at Stony Brook Medicine’s World Trade Center Health and Wellness Program who have tracked Gayson's health as part of a long-term study contend his case is part of a broader trend of 9/11 responders experiencing cognitive decline earlier in life due to their exposure to the toxic attack sites.

Researchers at Stony Brook last February petitioned the federal government to add dementia diagnosed before the age of 65 to the list of diseases covered by the World Trade Center Health Program, a federal program that provides medical treatment to about 140,000 people dealing with illnesses tied to their exposure to the toxic sites.

The process to get diseases added to the list was already a yearslong endeavor, with doctors and researchers required to submit ample data and reports demonstrating a link between a disease and time spent near Ground Zero, the Pentagon or Shanksville, Pennsylvania. But now 9/11 victim advocates are raising concerns that staffing shortages at the World Trade Center Health Program over the past year and leadership shake-ups at the Centers for Disease Control have delayed the processing of petitions.

"It would appear that the disruptions at CDC, last year’s series of firings and rehiring of program staff, the staff shortages that have resulted from the Secretary’s hiring freeze at the program, tied with the repeated and serial leadership and staff changes at the CDC that supervises the program, have impacted the ability of the World Trade Center Health Program to make these determinations and do its job," Ben Chevat, executive director of 9/11 Health Watch, a group that advocates on behalf of responders and victims seeking help from the World Trade Center Health Program, said in an e-mail to Newsday. "With the 25th Anniversary in a few months, 9/11 responders and survivors deserve answers to these petitions."

There are currently 40 petitions under review by the Centers for Disease Control, the oldest dating back to October 2019, requesting that cardiovascular disease be added to the certified list of diseases. Advocates say that before the Trump administration took over last year, they were advised a new batch of decisions on the petitions would be forthcoming by March 2025, but those decision letters never materialized.

A pair of petitions filed by the FDNY’s chief medical officer, Dr. David Prezant, in September 2023 to add cardiovascular and autoimmune conditions to the list of diseases were slated to get a determination from federal officials by March 2025, according to advocates, but a year later no decision has been announced.

A Department of Health  and Human Services official speaking to Newsday on the condition of anonymity to discuss the issue freely said the pandemic played a role in the delays, as officials were diverted to aid in the federal response to COVID-19. The official said the administration recently issued a decision on a petition from March 2020, ruling that there was insufficient evidence tying a rare autoimmune disease, Anti-Glomerular Basement Membrane Disease, to the attack site toxins. The official said the department is looking to issue more determination letters this year.

 Job reductions

Over the past year the World Trade Center Health Program has grappled with staffing shortages and leadership disruptions after Department of Health and Human Services Secretary Robert F. Kennedy slashed 10,000 jobs from the department.

New York lawmakers, including Rep. Andrew Garbarino (R-Bayport), successfully pushed back against the cuts, pushing Kennedy to restore the program’s longtime director, Dr. John Howard, after he was caught up in the widespread layoffs, and rescind other planned job cuts at the program.

The Centers for Disease Control and Prevention, which plays a role in reviewing and approving the 9/11 disease petitions, has also grappled with deep cuts.

New York lawmakers from both sides of the aisle, including Democratic senators Chuck Schumer and Kirsten Gillibrand and House Republicans Garbarino and Nick LaLota of Amityville have raised their concerns about the pending petitions in letters to Kennedy over the past year.

In a joint letter to Kennedy sent Monday, Schumer and Gillibrand raised concerns about the "thousands of 9/11 responders and survivors who are experiencing autoimmune, cardiac and cognitive conditions who have been waiting now over three and half years to receive a decision on whether the program will extend coverage to them. They have waited long enough."

Dr. Sean Clouston, who directs research at the Stony Brook World Trade Center Health and Wellness Program, has been part of the team of physicians and researchers tracking and studying the early onset of dementia among the 9/11 responders community. Clouston said he is concerned that the longer it takes to determine whether a disease goes on the list of approved illnesses, the smaller window of time there will be to provide help to those who need it.

"Responders are getting older; the window through which to do anything for people is always shortening if we wait, and wait, and wait, then those people that are struggling right now don't get any help, and then it may be too late by the time that we all agree," Clouston said in an interview.

Lost opportunities

Dr. Benjamin Luft, director of the Stony Brook World Trade Center Health and Wellness Program, said the longer federal officials take to make a decision, there more missed opportunities there may be to connect those dealing with dementia and Alzheimer’s disease with breakthrough therapies.

"We have responsibility for these people, since they went down there with the greatest of intentions and with real courage and with real love for our society," Luft said. "They weren't given a lot of the protective equipment that they needed, and now some of them have this insidious and progressive problem."

Marcia Percell, 60, of Central Islip is among those hoping early on-set dementia is eventually covered by the World Trade Center Health Program. Her husband James, 62, a retired New York City sanitation worker, arrived in Lower Manhattan a day after the attacks to help with the recovery effort and worked in the area for the next four months clearing truck loads of toxic rubble.

At age 55 his memory and cognitive skills started to rapidly decline, his wife said, noting that he would get lost driving on local roads he frequented most of his life. He no longer recognizes his son, and believes his daughter is his niece, she said.

After a recent MRI brain scan, a specialist told Marcia that her husband, now 62, has a life expectancy of about seven more years. 

"Time is of the essence," she said, her voice cracking over the phone. "We didn't ask for this. He was just trying to do his part. He was just trying to help out."

Donna Gayson said she also hopes federal officials recognize dementia as a disease covered by the program. She and her husband had saved for retirement, but the nest egg is not enough to hire a part-time caregiver to offer her a respite from his around-the-clock care.

"It's like he is the one who put his life at risk from the age of 18 when he was a volunteer firefighter in his town at the time, then he put his life on the line as a New York City firefighter, and then he went down to Ground Zero," Gayson said. "But look what happened to him — and now they’re just going to turn their backs on us?" 

By Laura Figueroa Hernandez

laura.figueroa@newsday.com@Laura_Figueroa

Laura Figueroa Hernandez is the White House correspondent and previously covered New York City politics and government. She joined Newsday in 2012 after covering state and local politics for The Miami Herald.