A quarter century after the September 11 terrorist attacks, long-term monitoring and treatment through the World Trade Center Health Program have helped responders and survivors live longer and with fewer symptoms. Yet shortages of mental health professionals and limited treatment options for sleep disorders remain major challenges, program leaders said.
David J. Prezant, MD, chief medical officer for the Fire Department of the City of New York, Alyssa Raghu, MD, medical director of the World Trade Center Health Program Clinical Center of Excellence at William Street Clinic, and Iris G. Udasin, MD, director of the Rutgers University World Trade Center Clinical Center of Excellence, discussed the program during a Sept. 3 symposium hosted by Mount Sinai Health System. They emphasized early diagnosis, continuing follow-up, and care from professionals who understand the people they serve.
Dr. Prezant, who was present during the collapse and its aftermath and helped triage patients at the scene, said the FDNY began monitoring personnel within four weeks of the attacks. More than 14,000 of the 15,900 FDNY members enrolled in the program are still alive, and 84% return each year. The program has conducted nearly 250,000 monitoring exams, 500,000 treatment visits, and 250,000 mental health visits.
Early monitoring identified what became known as World Trade Center cough syndrome, which includes sinusitis, asthma, chronic bronchitis and acid reflux. Nearly all FDNY members had a debilitating cough in the first weeks after the attacks, and 53% reported 1 during the first year, Dr. Prezant said. Today, 9% have a debilitating cough. Shortness of breath has declined from 40% to 22%, while wheezing has fallen from 33% to 18%.
“That monitoring led to early diagnosis, which led to early treatment,” Dr. Prezant said. The result, he added, has been not only longer survival but better daily life.
Mental health symptoms have also declined, Dr. Prezant said. During the first year, post-traumatic stress disorder affected 16% of FDNY members overall and nearly 30% of those present on the morning of the attacks. Today, 6% have PTSD. Symptoms of depression have declined from 36% to 14%, and 8 in 10 members now describe their health as good to excellent.
Cancer coverage was added in 2013 after WTC programs produced research showing increased risk. More than 4,000 FDNY members have developed cancer, and 26% have had multiple cancers, Dr. Prezant said. Among WTC responders with cancer, 86% were alive 5 years after diagnosis, compared with 63% of New York residents with the same types of cancer who were not exposed to the WTC disaster.
Dr. Prezant attributed those outcomes to more than access to medication. Patients receive care from teams they know and trust, he said, often alongside colleagues with similar experiences. Volunteers transport members with cancer or serious lung disease, while relatives, fellow firefighters or emergency medical workers stay with those who are hospitalized. Treatment is provided without financial pressures that can delay or disrupt care.
“People are not going to strangers for treatment,” he said. “They’re going to people that they loved from day one.” He described this trust and shared experience as the program’s “cultural integrity.”
Dr. Raghu focused on continuing barriers to care. At the William Street Clinic in Lower Manhattan, routine examinations uncovered needs beyond identifying and certifying WTC-related conditions. Mental health referrals were particularly difficult because patients could wait 6 months or longer for evaluation or treatment through the outside network.
“What does it mean to identify a problem if we cannot help a member get the care that they need?” she asked.
In response, the center launched its own mental health program in late 2023. The program offers therapy, medication management, and diagnostic evaluations, with about 11 evaluations completed each month. As of August, approximately 1,900 members had certified mental health conditions, and 145 were receiving treatment. Of those, 113 were in therapy, and 32 were receiving medication management. About 71 remained on the waiting list.
“If access was the problem, we needed to become part of the solution,” Dr. Raghu said. Still, the waiting list shows that demand continues to exceed available care.
Sleep disorders are another major burden. According to Dr. Udasin, 70% of WTC patients report some type of sleep disturbance, including obstructive sleep apnea, interrupted sleep, or waking because of worry. At least 20,000 patients are certified as having moderate or severe obstructive sleep apnea associated with another WTC-related condition.
Repeated airway closure during sleep can cause intermittent hypoxia and is associated with cardiovascular and metabolic disease, she said. Sleep disruption may also contribute to daytime sleepiness, motor vehicle crashes, poor attention, depression, cognitive impairment and reduced quality of life. These risks become more concerning as the WTC population ages.
Research involving WTC responders suggests their sleep apnea may differ from that seen in the general population, Dr. Udasin said. Body mass index was strongly associated with sleep apnea in patients without WTC exposure but not in WTC responders. Among responders, coughing and chronic rhinosinusitis emerged as important risk factors, even in patients with a low body mass index.
Outcomes were worse when sleep apnea occurred alongside chronic rhinosinusitis, gastroesophageal reflux disease, PTSD, anxiety, panic disorder or depression. Severe sleep apnea was also associated with hypertension and diabetes. Current studies are examining the links among sleep apnea, mental health, and cognitive decline, particularly in patients older than 65 years.
Treatment remains difficult. At least 30% of program members older than 65 years do not want to use continuous positive airway pressure, or CPAP, and oral mandibular advancement devices are not always well tolerated, Dr. Udasin said. Better options are needed for patients with several overlapping conditions.
Dr. Udasin closed by repeating what she tells her patients: “Thank you for letting us take care of you. It’s an honor.”