WASHINGTON -- A year ago, 9/11 victim advocates and New York lawmakers from both parties had major concerns about the future of the World Trade Center Health Program amid President Donald Trump's push to reduce the federal workforce.
The program's longtime director, Dr. John Howard, received notice last April that he was out as part of widespread layoffs at the Department of Health and Human Services. Weeks earlier, nearly a dozen other program employees were served pending layoff notices. And the program faced a looming budget shortfall, as the number of applicants seeking health coverage for cancers and diseases tied to their exposure to the toxic attack sites continued to rise.
A year later, advocates and lawmakers have notched a series of victories, one-by-one, to shield the program from the fate of some of the other federal agencies gutted last year by the Department of Government Efficiency, or DOGE.
New York lawmakers, working in tandem with advocates, have succeeded in reversing the dozens of layoffs, closing the funding gap through legislation and most recently getting assurances from the Trump administration that 37 job vacancies will be filled to address staffing shortages at the program, which serves more than 140,000 first responders, recovery workers and civilians exposed to the toxic dust from the Sept. 11, 2001 attacks.
"Through a lot of work from a lot of people, there's progress being made. But we shouldn't have to be making progress just to get to the point where we should have been all along," said Ben Chevat, executive director of 9/11 Health Watch, a group that advocates for the survivor community.
Chevat and other advocates contend that staffing shortages at the program have caused delays in patients being approved for treatments and new applicants getting accepted into the program. There's also been a delay in authorizing annual research grants for studies examining the evolving impact of toxic dust on those exposed nearly 25 years ago.
Lawmakers and advocates maintain their current priority is ensuring the three dozen vacancies are filled in a timely manner, so that the program can return to its authorized staffing of 120 employees.
"Until those people are on the job, we have to stay vigilant," Senate Minority Leader Chuck Schumer (D-N.Y.) told Newsday in a phone interview.
Sen. Kirsten Gillibrand (D- N.Y.), who along with Schumer received a briefing from Health and Human Services officials on the status of the program last Wednesday, described the talks as "productive."
"I was assured that hiring these staff is a top priority for HHS and that the agency is working expeditiously to fill the 37 positions that are open due to Trump administration cuts," Gillibrand said in a statement to Newsday. "I will continue monitoring the situation to make sure that these positions are filled as soon as possible and to hold the administration accountable for any further delays."
Rep. Andrew Garbarino (R-Bayport), who last year pressed White House officials directly to reinstate Howard and rescind the layoff notices, told Newsday in a phone interview that "the next mountain we have to climb" is addressing delays in getting new diseases added to the list of those approved for treatment and restoring monthly meetings between federal health officials and the advocate community that have stalled amid all the leadership changes at the Department of Health and Human Services.
"We can't let up, we can't stop the fight, because there's people that won't be around next year to pick it back up, if we do stop," Garbarino said, praising the dozens of advocates who travel each year to lobby lawmakers on Capitol Hill even as they grapple with cancers and other respiratory diseases.
Rep. Nick LaLota (R-Amityville), who pushed HHS officials to deliver a briefing to New York House Republicans on the status of the program earlier in April, told Newsday in an email that the agency’s updates to lawmakers “reflects progress ... but, 9/11 responders and survivors deserve more than plans, they deserve urgency and results.”
“I will continue aggressive oversight to ensure these positions are filled quickly and the World Trade Center Health Program delivers the care these heroes have earned without delay,” LaLota said.
A Health and Human Services spokesperson did not directly respond to questions about the agency’s timeline for filling the vacancies, but said in an email to Newsday: “The approval of these positions reflects HHS’ commitment to strengthening the program.”
“Protecting the health and well-being of those affected by 9/11 remains a top priority,” said spokesperson Emily Hilliard.
Lawrence Levy, executive dean of Hofstra University's National Center for Suburban Studies, said the fact that advocates and New York lawmakers from both sides of the aisle have found success protecting the program from cuts this past year underscored "the power to get things done, not only when Republicans and Democrats come together but through urban-suburban coalitions."
Michael Barasch, an attorney whose firm Barasch McGarry represents 9/11 victims, said the pledge to fill the vacant positions is "encouraging." But he said he believes there should be "a full accounting of the disparities created by these recent disruptions."
"An admission of error is not enough," Barasch told Newsday in an email. "The chaos over the last 12 months has been an abdication of the moral obligation our government has to those who took part in the post-9/11 recovery or even chose to return to work, school or home after being told the air was safe. We need the administration to do more than just restore the status quo."