WTC Health Program Now Wants Decades-Old Records to Prove Breathing Issues
Advocates for survivors of the terrorist attacks of September 11, 2001, are pushing back against a policy change by the World Trade Center Health Program, which tightens the requirements for documentation, in order to receive coverage of “aerodigestive conditions,” such as sinusitis or asthma. The change, announced last December and implemented the following month, focuses on the “maximum time interval” between exposure to toxic debris from the destruction of the World Trade Center and the onset of symptoms. Under the new policy, survivors seeking coverage and treatment through the Heath Program must produce medical records dated no later than 2007, which is five years after exposure was presumed to end (in July 2002).
This switch resulted in an immediate, steep decline in the number of aerodigestive certifications that the Health Program has approved. Rob Spencer, a spokesman for the Organization of Staff Analysts (a union of City employees) said, “the number of certification approvals for aerodigestive disorders by the program has fallen precipitously after the implementation of the new rules and procedures, dropping by what appears to be at least 50 percent.”
Ben Chevat, executive director of the nonprofit 911 Health Watch, said this threshold, “is very difficult to achieve in 2026. Medical records [from the required period] rarely exist at this time due to a variety of reasons: original healthcare providers are retired or deceased, medical records have been lost, or records were destroyed after the seven-year requirement for preservation passed.” He adds that prior to the 2010 enactment of the Zadroga bill, which created the Health Program, “aerodigestive symptoms and findings may not have been well understood by all exposed individuals, especially exposed children.”
Kimberly Flynn, the director of the nonprofit 9/11 Environmental Action, said, “this is a retroactive standard that creates new insurmountable hurdles for survivors seeking care for aerodigestive conditions. Getting treatment for the cough, sinusitis, asthma, or gastroesophageal reflux disease [GERD], which are the most common World Trade Center conditions, will be out of reach for anyone who cannot produce medical documentation.”
Mariama James, a member of Community Board 1 who has led the charge for accountability, transparency, and support for survivors for almost two decades, said, “as a parent who lived through September 11, I had to drag my children from doctor to doctor looking for someone who would listen and help, only to have their symptoms repeatedly dismissed. People thought those of us who spoke out back then were crazy. Even our beloved pediatrician, who cared for my kids from delivery through age 21, did not accept that their conditions were tied to September 11. Why? Because the federal government claimed the air was safe to breathe, telling us we were fine despite persistent coughs, laryngitis, recurring pneumonia, and violent stomach issues. My daughter, who was born in October of 2001, suffered gastrointestinal issues throughout elementary school, while teachers assumed she was faking. The federal government spent years deceiving the public and telling doctors there was no risk, which discouraged proper diagnoses and left survivors without access to the routine screenings and preventative care responders received.”
She continued, “now, the Health Program is unfairly punishing survivors for the government’s own catastrophic failure. Requiring 20-year-old medical records from a time we were told we didn’t need care is an unscientific, impossible hurdle. Survivors were denied early screenings, told our physical health impacts were mere anxiety, and left without authoritative diagnoses for years. Demanding these irretrievable records today effectively locks us out of the care Congress promised.”
Jess Coleman, a CB1 member who was a seven-year-old student at P.S. 89 in the fall of 2001, said, “children were some of the most vulnerable victims of the attacks, with few choices and little voice in the years that followed, let alone the foresight to properly document any health problems and hold onto the proof, just in case. When you set a standard that’s effectively impossible to meet, it starts to feel a lot more like abandonment.”
In July, CB1 enacted a resolution noting, “survivors had no access to authoritative diagnoses for their September-related conditions until 2007,” and, “there is no sound scientific or medical basis for the [Health Program’s] determination that aerodigestive conditions caused or exacerbated by World Trade Center exposures would have onset before 2007.”
A spokesman for the federal Centers for Disease Control, which oversees the World Trade Center Health Program, did not respond to a request for comment.