"The long-term consequences still haven't been clearly identified," Cosgrove says, "so to stop funding now is inappropriate because we will continue to see the progression of disease."
Pulmonary fibrosis is among diseases that can take decades to manifest themselves. "We're not even two decades past the event," Cosgrove says, "and people with asbestos exposure, for instance, don't begin to present until the third decade."
Doctors still don't fully understand how pulmonary fibrosis works, Cosgrove says, because it is relatively rare and its causes are tough to track. Some cases have no known cause, and there are 180 other diseases that can cause pulmonary fibrosis in some patients.
In addition, the lung injuries that cause some cases can stem from a wide range of factors. Those can include seemingly innocuous things such as long-term exposure to pet birds or to wood dust from woodworking, or more obvious exposure to smoke, chemicals and debris from industrial sources.
The Ground Zero site contained dust that held heavy metals and asbestos, among other hazards. Over time, those irritants can produce scarring, or fibrosis, in the lungs, impeding their ability to breathe and absorb oxygen. The abnormal scarring response is irreversible, and the severity of its effect varies widely from person to person. Some people will never develop fibrosis, while others develop progressive scarring that continues to worsen over time.
Doctors who study pulmonary fibrosis are just beginning to focus on 9/11 victims as the long-term effects of exposure are emerging. "We need to continue to monitor these people to make sure they receive the kind of care they need," says Cosgrove, "but also to try to understand more about the kinds of exposures, whether there are correlations between lung disease and where people were or the kinds of work they were doing."
As research continues, Cosgrove says, pulmonologists hope that it may have implications that go beyond those injured by 9/11 exposure. Frey, who is now an ambassador for the Pulmonary Fibrosis Foundation, hopes to help by raising awareness of pulmonary fibrosis within the community of those affected by exposure at Ground Zero and with the public. He, like other pulmonary fibrosis patients, was told that his long-term survival is a long shot: "They tell you two to five years," he says. "It's creepy, like a jail sentence. But there is a lot you can do. I have learned how to go out and try to live my life as best I can."
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