More than 23 years after the Twin Towers collapsed, the number of people diagnosed with 9/11-related illnesses has been growing, with toxic dust and debris covering lower Manhattan.
Since 2011, the main resource for people exposed to smoke is the World Trade Center’s Health Program, which covers the treatment of health conditions such as cancer, asthma, and post-traumatic stress disorder.
Of the approximately 132,000 people enrolled in the program as of December, 64% have at least one condition linked to 9/11. Cancer is the most common and affects more than 40,000 members. Some will participate in the program after the onset of the disease, while others will participate in annual screenings that will detect diseases in the future.
The fate of the program has been seen over the past 10 weeks as the Trump administration fired and rehired certain staff members as they fired and rehired certain staff members, according to lawyers and advocates for those with 9/11-related revelations. They added that cuts in staffing delivery have made it difficult for members to register, and that their treatment is covered by federal funds.
Todd Cleckley, a nurse health professional at a law firm representing 9/11 responders and survivors, said:
“The health program was already operating at a very slim staffing margin,” he added. “We’re just starting to see what these negative effects will be.”
Sixteen of the program’s staff were caught in the firing of a Trump administration’s prosecutor worker in February. The administration regained its status about a week after protests from both Republicans and Democrats in Congress.
Then, in late March, the Department of Health and Human Services announced that it had fired about 20,000 federal employees. These layoffs included 16 staff members, including the director of the program, according to lawyers and advocates, in addition to the World Trade Center’s health program. The superintendent was revived on April 5th after more bipartisan opposition, they said, but staff were not.
The HHS layoffs were part of a major restructuring that hampered the agency responsible for the World Trade Centre Programme, the National Institute of Occupational Safety and Health (NIOSH). In addition to the 16 staff, HHS has terminated employees from other labs responsible for certifying patients’ 9/11-related illnesses as eligible for federal funding, lawyers and advocates said.
“They didn’t appear on the World Trade Center program’s salary, but they did something essential to running the program,” said Benjamin Chevat, executive director of 9/11 Health Watch, a nonprofit group that provides access to the program’s services.
Lawyers and supporters will visit Capitol Hill on Tuesday to ask lawmakers to revive their staff. HHS did not respond to requests for comment.
New York City Mayor Eric Adams said his office reached out to the federal government “on the recovery of these important resources.”
“New York City is dedicated to providing quality healthcare to the heroes we responded to on 9/11 and survivors of the most tragic day in American history,” Adams said in a statement. “Partnerships with the federal government to provide these services were essential and I remember accessing life-saving time-sensitive treatment for all the firefighters, police officers, volunteers and everyday New Yorkers who remember the day and rebuilding it the next morning.”
Before staffing reductions, 9/11 responders and those who lived, worked or worked in schools or daycare in disaster areas will be applied to participate in the programme and are usually accepted within a few weeks. However, Chevat said no one has been registered since April 1st. The program typically registers about 200 people per month on average.
Michael Barasch, a partner at Barasch & McGarry, said he has still submitted applications on behalf of his client, but “they haven’t heard from the health program, so they don’t know when or when they’ll get an appointment.”
Members of the program will receive annual screenings at accredited hygiene clinics that are largely concentrated in the New York area. So, doctors evaluate people for hosts of mental and physical illnesses with known connections to 9/11. If the doctor determines there is a link, the clinic will submit the documents to a federal employee. Federal employees must prove they are eligible for funds before treating patients for free. Last year, more than 8,200 cancer diagnoses were certified.
No new certifications have been issued since the beginning of April, shortly after HHS announced it was demolishing Niosh.
The delay could have disastrous consequences for those exposed to toxic dust and debris, lawyers and supporters said. Many cancers – once identified – must be dealt with immediately.
“We don’t hear people say inflammatory just to make headlines, but that’s true. People will die for these decisions,” Barash said.
The collapse of the twin towers left cancer-causing chemicals such as asbestos, benzene and dioxins in the air for days to weeks. A decade of research found that among disaster-responding rescue workers and recovery workers at a higher risk of leukemia, prostate and thyroid cancer. Other cancers such as lung cancer and mesothelioma may occur decades after exposure to asbestos, and future diagnosis is expected.
“We were breathing glass, asbestos, and everything else you could imagine,” said Michael O’Connell, who assisted in search and rescue operations as an early career firefighter after 9/11. “We slept in it, we ate it, we bleed it. We didn’t leave it. We were in that zone for almost nine months.”
Approximately six years later, O’Connell was diagnosed with a rare inflammatory disease called sarcoidosis, causing debilitating pain in the joints and skin. He was treated through the World Trade Center’s health program. The idea that new members may not be able to register or receive treatment is “deeply intrusive,” he said.
If NIOSH staff does not recover, lawyers and advocates say hospitals may not be refunded for chemotherapy or surgery, and may ultimately stop providing to patients. Barash said he already received a call from a client who is worried about whether he could continue with chemotherapy.
“It’s bureaucratic cruel,” he said. “They are trying to save money, and that’s fine, but don’t do that behind the 9/11 community.”
Maria Majames, a Manhattan resident who was pregnant with her third child between 9/11, said she was waiting to see if the program would cover treatment for sleep apnea. She now hopes that the process will be delayed.
“If NIOSH doctors are fired, how will they cover the new medication?” James said. “I’ll be waiting for that medicine forever.”
Barash said the World Trade Centre health program is already vulnerable before the layoffs. In December, Congress chose not to include a long-term funding package in its programme in its bipartisan spending agreements. Several lawmakers expect the budget shortage will force the program to close current member registrations and reduce treatment for current members from October 2028. The bipartisan bill, introduced in the Senate in February, calls for more funds to be available until the program expires in 2090.
In addition to lobbying for program staff to be rehired, lawyers and supporters will ask lawmakers to support the bill on Tuesday.
