BRADENTON, Fla. (WFLA) — 9/11 ceremonies come once a year to remember the lost lives and impact of the attacks, but health problems are an everyday reminder of the day for thousands of survivors.
According to a report by the Government Accountability Office (GAO), World Trade Center Health Program (WTCHP) patients cope with delays in accessing care, prompting recommended changes to the system created about a decade after the 2001 tragedy.
The WTCHP was created to care for survivors about a decade after the towers fell.
Outside of New York and New Jersey, Florida has the highest number of people in the program with more than 3,500 residents enrolled. In all, there are 114,000 participants, including about 88,000 first-responders.
Nearly 3,000 people were killed in the attacks in New York, Pennsylvania, and Washington D.C., including 343 firefighters.
Retired New York City firefighter Garrett Lindgren, who early on was among those reported missing, is one of the enrollees who are treated for a variety of nearly 50 conditions that are covered by the WTCHP.
Lindgren, 64, now of Bradenton, is treated for several ailments but he and others are still fighting for help with uncovered conditions including the nerve-scarring disease toxic neuropathy.
“It’s getting significantly worse. It affects the way I walk,” Lindgren said. “It’s affecting my balance. It causes a lot of pain. It wakes me up at night.”
The GAO launched its study after “reported delays with members’ access” to WTCHP healthcare.
GAO Healthcare Director Michelle Rosenberg said the agency’s report made three recommendations focused on “timely access” to care.
“Delays in timely care can affect folks’ condition,” Rosenberg said. “They can become sicker, ultimately, unfortunately passing away [in some cases.] So that’s why we think our recommendations are so important.”
The recommendations include WTCHP adding access to timely care to its strategy, creating metrics to measure access, reviewing the results at least annually, and taking steps toward improvement.
Rosenberg said the lack of monitoring was particularly noticeable for “those outside the New York City area.” New York area patients can be treated in eight different clinics, according to the GAO, while the rest of the country is served by a network of providers.
According to the report, the cost of the program has nearly doubled in the last six years, climbing from just under $183 million in 2016 to more than $338 million in 2021.
An unrelated report last year predicted the program could run a deficit by 2024.
Rosenberg said the GAO will be watching.
“Right now, they have agreed to follow the recommendations,” Rosenberg said. “We will stay on top of it to see what steps they take and if they appropriately implement the recommendations.”
Lindgren said delays on the phone and online are especially difficult for survivors who are ill. According to Lindgren, the process can be especially draining for anyone with PTSD, which is a covered condition that he has.
“Maybe that’s the reason they’re trying to log in is to maybe start getting help with PTSD,” Lindgren said. “It’s very hard for a person in that situation to deal with this kind of frustration. Almost impossible.”