WTC Health advocates say funding fix will still leave more work to stabilize program

WASHINGTON — Just as the World Trade Center Health Program appears on track to clear one hurdle — inching closer to a congressionally approved boost in funding — advocates say they remain concerned by other problems that have saddled the program over the past year.

Last Thursday, the U.S. House passed a spending bill that would ensure the financial future of the program, but the measure must still pass the U.S. Senate. If it does and is signed into law by President Donald Trump, the spending bill would resolve a projected $3 billion budget shortfall facing the program over the next decade.

But advocates for the program say they are concerned the program is facing a separate crisis — having years of research, collaboration and prompt service stymied by some of the policies implemented over the past year by Health and Human Services Secretary Robert F. Kennedy Jr.

The program currently has 84 workers on staff compared with the 93 on staff when Trump was sworn in last January, and fewer than the 120 positions authorized by the Office of Management and Budget, according to 9/11 Health Watch, a nonprofit advocacy group that last week sent Kennedy a letter outlining its concerns.

“This decline in staffing has occurred as program enrollment has continued to grow,” wrote 9/11 Health Watch executive director Ben Chevat. “It has grown by approximately 20,000 in the last two years and is on track to increase by another 10,000 this year.”

The program, which serves close to 140,000 people who have fallen ill from their exposure to the toxic Sept. 11 attack sites, has weathered a rocky past year when widespread layoffs across the Health and Human Services Department led to the firing of the program’s director Dr. John Howard. New York lawmakers, including Rep. Andrew Garbarino (R-Bayport), successfully lobbied the White House for Howard’s eventual reinstatement. Other program workers were also issued layoff notices mid-year that were ultimately rescinded amid outcry from lawmakers and advocates.

“The staff shortage has damaging effects: slower treatment approvals, backlogged research grant authorizations, and less-than-adequate supervision of the program’s vendors and contractors,” Chevat said in his letter.

In a statement, DHS did not say whether more staff would be hired, and did not address Chevat's concerns regarding delays in approving new applications or certification of new diseases reported among some survivors.

“The World Trade Center (WTC) Health Program’s Clinical Centers of Excellence and Nationwide Provider Network are continuing to provide services to program members at this time,” a DHS spokesperson said in an emailed statement. “The program continues to accept and review new enrollment applications and certification requests.”

Extended waits

Michael Barasch, whose law firm Barasch & McGarry represents a number of 9/11 survivors, said he has clients who have experienced longer wait times for services in the past year.

“If it’s taking six months to get an appointment … that can make the difference between a diagnosis at stage one [cancer] versus stage four,” Barasch said.

He called on Kennedy to staff the program at the 120 workers it is budgeted for, so “we don’t have people waiting four to six months for an appointment.”

Advocates are also urging Kennedy to revive monthly meetings between federal health officials and two standing committees of doctors, first-responder union leaders and advocates who for more than two decades met without interruption to discuss health trends and issues arising among the survivor community.

Since Kennedy took over, the group has only met once, in November, and committee members are unsure if another meeting will happen.

“End the communications blackout,” Barasch said. “We’re not Russia. We should be able to talk and share information and find out what’s going on.”

Research disruptions

Research programs looking into medical conditions caused by 9/11 toxins have also been thwarted over the past year, Chevat said in his letter.

“Earlier this year [Secretary Kennedy] disrupted research on 9/11 cancers — canceling, then restoring, already-approved research,” Chevat said. “This year’s research awards process, which normally would have started in March of 2025, still has not yet begun; we have only vague promises that it will be done this year, if at all.”

HHS did not respond to questions about whether the research grants would resume this year.

John Feal, a longtime 9/11 advocate and founder of the Nesconset-based FealGood Foundation, which provides financial assistance to 9/11 survivors, said the community of advocates who have long fought for the World Trade Center Health Program are cautiously optimistic about the funding measure's passage by the Senate, but still feel as if they have to worry about the direction of the program under Kennedy.

“These men and women are sick and dying, and the World Trade Center Health Program is their lifeline,” Feal told Newsday in a phone interview. “The faster we get them enrolled, the faster we get them certified, the better chance they have of living. Secretary Kennedy is putting that at jeopardy because of his pure incompetence."

Feal said while he is concerned by the "damage that will be done" to the program, he is confident the 9/11 community will be "able to rebound" and address any future issues with the program.

"The 9/11 community, while it's a finite number, it's resilient,” Feal said. 

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.