The long tail of Sept. 11 illness

The tragedy of the Sept. 11 terrorist attacks didn't end on Sept. 11, 2001.

Almost 25 years later, the number of individuals suffering from Sept. 11-related illnesses surpasses 97,000 — including nearly 12,000 FDNY members, according to a recent report.

The diseases have broadened to include acute respiratory issues, digestive illnesses, cognitive and mental health needs, and a vast array of cancers. As illnesses and treatment efforts shift, government programs in place to help must be nimble enough to change, too.

More recently, cancer has become a dominant concern. In the federal World Trade Center Health Program's lifetime, there've been 57,044 cancer cases certified as connected to the attacks, harming first responders and other survivors, according to federal data. In the 12 months ending in June, 10,393 new cancer cases were certified, outpacing other diseases. Skin, prostate and breast cancers are common, but hundreds more rare cancer diagnoses are included too.

On Long Island, 25,588 Nassau and Suffolk residents are enrolled in the World Trade Center Health Program, including 10,150 living with Sept. 11-related cancers, according to the Centers for Disease Control and Prevention. At Stony Brook's World Trade Center program, of 16,000 patients, nearly 1,000 have died. Of the remaining patients, 5,269 have at least one cancer. This year, Stony Brook is averaging about 100 new cancer certifications each month. As Julie Broihier, the program's administrative deputy director, put it: "The people coming into the program now are coming in with more serious disease ... and they require a lot of intense help."

Similarly, at Northwell Health's World Trade Center Health Program, 1,517 of 5,000 patients have at least one cancer — and a remarkable 30% have more than one, according to Dr. Jacqueline Moline, who directs Northwell's program and chairs its occupational medicine department.

"We have to make sure people understand it's not just a 2001 issue," Moline told the editorial board. "We really need to keep following and treating these folks for decades to come. We know it's only going to continue."

That requires significant attention and resources. While the WTC's federal health program's funding is finally permanently in place, staffing remains in unfortunate flux. There are still too many unfilled positions. Director John Howard's term expires in the coming months. Renewing his term now, and hiring enough staff to fully operate the program, are crucial steps.

Federal officials also must understand the shifting dynamic of illnesses which first responders and other survivors are experiencing. The program currently allows doctors to do early, regular screenings for only a few cancers and hasn't always kept up with evolving scientific and medical developments. Widening screening parameters, expanding monitoring, supporting key research efforts, covering new conditions as warranted, and providing flexibility in testing and treatment options would help.

Also key: making sure those who lived, worked or studied near Ground Zero, especially young adults who were children or teens at the time, join the World Trade Center Health Program. They should sign up now — so when they need care, it's there for them, too.