your connection to The Boston Globe

9/11-responders' health woes reach beyond NYC

Critics decry delay in release of federal guidelines on care

NEW YORK -- The lung problems of ground zero worker Jimmy Willis got so bad that he finally left New York, hoping the dry air of Nevada would blow away the after-effects of toxic World Trade Center dust.

But when he moved two years ago, Willis also left behind New York-based medical expertise on Sept. 11-related illnesses, joining a diaspora of hundreds of ground zero rescue workers scattered throughout the United States.

It is a population many health specialists, union leaders, and politicians say is vulnerable to poor medical treatment because the government delayed the release of guidelines that would help doctors nationwide diagnose and treat illnesses linked to the attacks. A standard medical protocol for healthcare workers is one element of what a growing chorus of advocates says should be a long-term, national program to test and treat sick workers.

Five years after the attacks, Willis, 51, has respiratory disease and gastro intestinal bleeding.

``I've been in and out of the hospital since I've been here," said Willis, a former transit worker and onetime union official now living in Las Vegas. ``But they weren't coming back with any answers, and I almost bled to death."

The creation of testing guidelines, or protocols, was shelved for years. Most recently, officials indicated a release by the end of this year. The lag has been criticized by workers' advocates.

``It is outrageous that we don't have protocols five years out, and the consequences have been unfortunate for many workers, when their doctors across the country aren't trained to recognize specific symptoms," said Joel Shufro of the New York Committee for Occupational Safety and Health, a union group.

The New York City Department of Health is crafting the protocols, but there is no set deadline for their release. At the same time, the federal government is promising a website to serve as a clearinghouse for Sept. 11 health information for people nationwide.

``We're working on it as quickly as we can. We want to make sure it's done right, and in a way that will provide a service to the responders," said Fred Blosser, a spokesman for the National Institute for Occupational Safety and Health.

The exact number of rescue workers who responded to the attacks is unknown, although estimates are more than 40,000. In New York, the focal point of research on Sept. 11-related illnesses has been Mount Sinai Medical Center; thousands have sought treatment there. Mount Sinai is expected to release its most significant findings on sick workers days before the fifth anniversary of the attacks .

Beyond the city, there is a nationwide network of health clinics that offers medical screening to Sept. 11 workers.

The program, run by the Association of Environmental and Occupational Health Clinics, has seen 664 patients, including 121 in the last year. Its clinics in 33 states offer a battery of tests for those worried that ground zero made them sick.

Testing guidelines are crucial, however, to helping a doctor in any clinic or network recognize symptoms, said Kathy Kirkland, the association's executive director. She said standardized protocols can help alert healthcare workers to the less obvious ailments connected to ground zero work.

Take the gastro intestinal problems afflicting Willis.

``That's fairly common among World Trade Center responders, but it's something a lot of clinicians wouldn't recognize, wouldn't know," she said.

Or the lungs. A standard pulmonary test doesn't show the extent of Sept. 11-related damage because although it can measure lung capacity, it doesn't gauge the wear-and-tear inflicted on the organs, she said.

``A lot of guys on the surface seem to have normal lung function, but compared to what they had before, their lungs have aged a whole lot faster than they should have," Kirkland said. ``Again, that's not something the average clinician would think to check."

The out-of-state rescue teams that responded have some advantages: On balance, they stayed on the smoking pit for fewer days, and many arrived with respiratory gear. Still, concerns linger .

``We still talk about it when someone gets sick," said firefighter Terry Trepanier, who returned to Ohio with ``World Trade Center cough" and failed his first lung test . ``In the back of our minds, we wonder if this is something from the World Trade Center, or is it just something else."

Today (free)
Yesterday (free)
Past 30 days
Last 12 months
 Advanced search / Historic Archives