9/11 Health Screening Program Still Has Problems

September 11, 2001, not only was the largest attack against our nation in history, with the highest casualty rate of 2,977 dead, but it also rapidly became clear that it would continue to take lives long after the smoke cleared.

In the attack’s aftermath, the Environmental Protection Agency initially stated that the air was safe to breathe and water safe to drink. Shortly after the attacks, though, many of the responders and others began developing breathing illnesses. These lung issues became pronounced. By 2008, lung functions in responders had dropped at 12 times the rate of normal aging. 

In February of 2009, the James Zadroga 9/11 Health Screening Act was introduced in Congress. Named after NYPD Detective James Zadroga, who was 34 years old when he died from 9/11-related illnesses, the bill was passed into law in order to create the WTC Health Screening Program that would monitor, track and treat 9/11 responders and other victims of the attacks and the 9/11 Victims Compensation Fund which allows those impacted by the attacks to seek damages.

The health screening program was broken up into separate “Clinical Centers of Excellence,” which generally include one run by the Fire Department City of New York (FDNY), another based at Mt. Sinai Medical Center, one at Rutgers University and finally a national program run by a contractor. To register, a responder or victim chooses one of the Centers for Excellence to register with, which is where their tracking and treatment will occur. Because of the structure of the program, those registered can only seek treatment where they are registered; otherwise, they have to transfer to another clinic. 

If you live in New Jersey but are registered at Mt. Sinai, you have to go to Mt. Sinai for treatment and care; you can’t go to Rutgers unless you transfer your case. If you live outside the New York Metropolitan Area and register for the national program, run by a contractor, then you have to go to the places the contractor designates.

The entire program is managed by the National Institute for Occupational Safety and Health (NIOSH), part of the Centers for Disease Control and Prevention (CDC) in the U.S. Department of Health and Human Services Center, which also led the nation’s complicated COVID protocols.

Prior to that, the federal government had tried to create a health screening program for federal employees (which included Secret Service, FBI and other agents who worked at all three of the terrorist attack sites). But early on, the program was cited in a 2006 Government Accountability Office (GAO) report as having “lagged behind and accomplished little.”

A September 2007 GAO report titled “Improvements Needed in Availability of Health Screening and Monitoring Services for Responders” chided the program for “having difficulties providing uninterrupted availability of services for responders,” and reported that diagnostic services that were provided had “also been intermittent.” The report said that “NIOSH has not ensured the availability of services for nonfederal responders residing outside the NYC Metropolitan Area.”

Almost six years after the attacks, HHS still had issues providing availability of screening and care for responders, some of which could be blamed on a lack of a formal program or dedicated funding pool.

In 2008, though, another GAO report said, “In brief, we reported in July 2007 that HHS’s WTC Federal Responder Screening Program had had difficulties ensuring the uninterrupted availability of screening services for federal responders and that NIOSH (National Institute of Health), the administrator of the program, was considering expanding the program to include monitoring but had not done so. We also reported that NIOSH had not ensured the availability of screening and monitoring services for nonfederal responders residing outside the NYC metropolitan area, although it had recently taken steps toward expanding the availability of these services. As a result of our assessment of these programs, we recommended that the Secretary of HHS expeditiously take action to ensure that screening and monitoring services are available for all responders, including federal responders and nonfederal responders residing outside of the NYC metropolitan area. As of early September 2007 the department has not responded to this recommendation.”

HHS appeared still to be dropping the ball.

In 2010, when the 9/11 James Zadroga bill was passed, Congress provided almost $3 billion dollars to create and specifically fund the 9/11 health screening program, supposed to last till 2031.

Over a decade later, in 2022, as the nation was recovering from the chaos of the COVID pandemic, the 9/11 program came back to Congress for $3 billion more in funding; Congress gave them $1 billion.

That same year, another GAO report cited potential problems in providing “timely access to health services” which, it said, NIOSH had not specified as being “among the program’s strategic priorities.” Over 20 years after the attack, the government was still failing to live up to its promises.

Over 23,000 people have been diagnosed with a 9/11 linked cancer, and at least 1,500 have died of those cancers. More people have now died from exposure diseases than died from the original attack.

And yet, the World Trade Center Health Screening Program remains under scrutiny for its bureaucracy and lack of timely access to care, leading responders to ask: “Have You Forgotten?”

Donald J. Mihalek is a retired senior Secret Service agent and regional field training instructor who served on the president’s detail and during two presidential transitions. He was also a police officer and served in the U.S. Coast Guard.