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W.T.C. health survey is poorly run, some say

By Elizabeth O’Brien

The city’s World Trade Center Health Registry has not asked enough questions of enough people, Downtowners criticized at an environmental forum last week.

At the event, sponsored by New York University School of Medicine and held in the landmark Woolworth Building, scientists presented 9/11-related research to an overflow crowd of more than 120 people. Some said that the forum failed to provide the practical health information they were seeking. The project director for the health registry spoke last and received the brunt of participants’ frustration during the question-and-answer session that followed.

“The registry fails, and it fails miserably,” said Scott Shields, who was among the first rescue workers to respond to the disaster.

Shields said that during a registry phone interview he was asked if he wore a mask when he worked on the pile. The counselor did not ask the critical follow-up questions of what kind of mask he was wearing or whether it fit properly, Shields said.

Deborah Walker, the project director of World Trade Center Health Registry, which is being run by the city’s Dept. of Health and Mental Hygiene, said that the survey was never meant to be exhaustive.

“The purpose of the questions is to collect very basic, baseline information,” Walker said.

While budget and other concerns limited the city’s initial telephone interviews to 30 minutes, Walker said, participants can give consent to be contacted in the future about other W.T.C.-related studies. This would provide an opportunity for detailed follow-up questions, she added.

The city launched its health registry last month, after beginning to plan the project in October, 2001, Walker said. It aims to track the physical and mental health of thousands of people who were near the Twin Towers on Sept. 11, 2001, or who worked on the W.T.C. cleanup at the site or at Fresh Kills but were not close to either place the day of the attack. City officials said last month that they hoped the survey would grow into the largest of its kind in the U.S.

But some at last Tuesday’s forum criticized the health registry’s ad campaign for not reaching enough people. Its slogan, “I was there September 11th,” is misleading, they said, because certain groups can participate even if they weren’t in the immediate vicinity of the disaster. These include people whose primary residence was south of Canal St. on Sept. 11, 2001, even if they weren’t home that day, and those who worked on the pile or at Fresh Kills after the day of the attack.

“You’ve got to do something about the advertising campaign,” said Jo Polett, a Tribeca resident.

Walker responded that the slogan had received positive feedback in focus groups of residents. It works because people tend to associate Sept. 11 more with an event than with a specific date, she added. Walker told Downtown Express after the forum that a new ad campaign would be released in early spring; the Health Department had always planned to take the emphasis off the date in its second campaign, she said.

The agency plans to monitor participants’ health every three to five years up to 20 years, depending on funding, Walker said. Organizers hope the initiative will give them a broad understanding of the different ways the Twin Towers’ collapse affected those closest to the disaster.

One frustration that emerged at last Tuesday’s panel was the lack of conclusive evidence on the health impact of the disaster. Researchers presented initial findings on topics including the effects of W.T.C. dust on mice and incidence of new asthma in those living near the Twin Towers and a control group. Some studies presented, like the one on the development of W.T.C. babies, were still underway and had no conclusions to offer.

Some of the findings presented were already familiar to many following the environmental fallout of Sept. 11. For example, Lung Chi Chen of New York University School of Medicine said that based on his studies with mice, it seemed likely that humans exposed to high doses of W.T.C. dust would have greater risk of developing twitchy airways. This conditions results in coughing and itchy throats, Chen said, and poses the greatest risk for workers who labored at the site.

Many participants said they struggled to find useful information amid the high-tech. presentations.

“I don’t have a strong sense coming out of this evening what we should be concerned about long-term,” said Mark Scherzer, of 125 Cedar St., across the street from the W.T.C.

Scientists said that the unprecedented nature of the towers’ collapse made it hard to draw early conclusions about its health consequences. Scientists said they will continue their research and that residents and workers must be vigilant about their health.

“We need to be aware of what our bodies are telling us, so we don’t miss the signals,” said Alison Geyh of the Johns Hopkins Bloomberg School of Public Health.

The city is still looking for residents and workers to sign up for its health survey. As of last Tuesday, 6,313 people had enrolled in the registry, with 65 percent of that number from New York City.

Even those who feel completely healthy are encouraged to register. For more information and to register, visit the Web site at www.wtcregistry.org or call 1-866-NYC-WTCR (1-866-692-9827).

Elizabeth@DowntownExpress.com