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Uncertainty reigns over possible end of 9/11 health programs

At a park Thursday in Winnetka, Ill., 3,000 flags were placed in memory of the lives lost on Sept. 11, 2001. jim young/reuters

NEW YORK — Fourteen years after the 9/11 attacks, a new round of uncertainty looms for people exposed to the million tons of toxic dust that fell on New York when hijacked jets toppled the World Trade Center.

Two federal programs that promised billions of dollars in compensation and medical care to sick 9/11 responders and survivors are set to expire next year, five years after they were created by Congress.

As Friday’s anniversary of the terror attacks approached, advocates for responders renewed their push for an extension. Bills in the House and Senate would keep the health program going indefinitely while making billions of additional dollars available for compensation for people who fall ill.


But the debate over an extension is taking place in a fog of ambiguity. Many 9/11 responders, such as Charles Diaz, are trying to figure out whether some or all of their care might be covered by private, public, or union insurance plans when the programs end.

Diaz, a retired Sanitation Department police captain, suffered a broken arm when the towers fell and was later diagnosed with a cancer that he blames on exposure to dust. Today, he relies on the World Trade Center Health Program to pay for the anti-leukemia drug Sprycel, which has a list price of $10,300 per month.

It’s unclear who will pay for the drug if the program goes away. ‘‘I have no idea,’’ Diaz said.

Almost 21,600 people received treatment through the World Trade Center Health Program over the past year, according to federal data, but officials haven’t been able to say how many patients might lose access to doctors or medication if the program shuts down as planned next September.

Most health plans for active or retired city workers do cover cancer care, but some patients can still get socked with thousands of dollars in co-payments, depending on factors including availability of worker’s compensation, the strength of their union’s pharmacy plan, and whether they live close enough to New York to be treated by an in-network doctor.


‘‘It’s a very complex world of cost, and a lot of our members just don’t want to go there,’’ said Dr. John Howard, director of the National Institute for Occupational Safety and Health, which oversees the World Trade Center health program.

Congress initially capped spending on both the health and compensation programs and designed them to close within five years, because of concerns about the cost of caring for so many people, including many with common illnesses that might be unrelated to 9/11.

It’s not clear how much it would cost to keep the program going, although the safety and health institute has offered one speculative estimate of an additional $1.83 billion to $2.22 billion over the next five years.

That would be a big increase over the $763 million the program spent from its creation through the end of August. About 58 percent of that money went to patient care. Just under a third covered administrative costs. About $97 million was spent on research and data collection.

Thousands of people who have applied for a payment from the 9/11 Victim Compensation Fund, a separate program, are facing a strong likelihood there won’t be enough money to pay awards in full.

As of Sept. 6, the fund had awarded $1.44 billion to 6,285 people who developed health problems possibly related to the time they spent at the World Trade Center site, the Pentagon, or the Flight 93 crash site in Pennsylvania.