Volume 16, Number 28 | The Newspaper of Lower Manhattan | December 9-16, 2003

Residents raise questions on W.T.C. Health Registry

By Elizabeth O’Brien

Some Lower Manhattan residents continue to feel shortchanged by the city’s World Trade Center Health Registry, even though anyone who lived south of Canal St. on Sept. 11, 2001 is eligible to enroll.

Nearly 30 local residents and workers attended a forum on the health registry last Thursday at the Downtown Information Center at 25 Broad St. Some participants told assistant health commissioner Dr. Polly Thomas that the interview portion of the registry seemed geared toward emergency workers.

If residents are not asked detailed questions about their experiences on and after 9/11, then the study will not be able to address their potential long-term health concerns, some residents fear.

“I want to make sure that the residents are taken care of, because I don’t think they are,” said Darlene Newman, who volunteered to help the city maintain contact with Downtowners.

The city’s Department of Health and Mental Hygiene launched its World Trade Center Health registry in September. 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. Residents who lived south of Canal St. on 9/11 but were not home that day are also eligible to enroll.

As of last week, nearly 15,000 people had been interviewed for the registry, Thomas said. Of the respondents, 53 percent were office workers, passersby, or commuters in the vicinity of the Twin Towers on the morning of 9/11; 26 percent were emergency workers in the “red zone,” Fresh Kills landfill, or the debris barges; 19 percent were residents; and 2 percent were students and staff at schools or day care centers south of Canal St. on 9/11.

Participants at last week’s forum said that the city should do more to recruit residents for the registry, and that residents should be asked more detailed questions once they do enroll.

“I found there were very few questions for residents who were in the area trying to clean their homes,” one woman said.

“We’ve heard that comment from a lot of people,” Thomas responded.

She said that the department had to make some very difficult decisions about what to include in the 30-minute telephone interview.

“For every question we put in the questionnaire, we had to throw out about five,” Thomas told Downtown Express after the forum.

Budget and time constraints influenced the number of interview questions, Thomas said. But the registry was never designed to probe deeply into a particular aspect of a participant’s experience, she added.

Instead, Thomas explained, it aims to enroll as many people of as many different categories as possible. This will help the city identify the ways that the Twin Towers’ collapse affected various populations, and also to pinpoint areas of future study.

While the interview questions will not be changed, the department is working to recruit more residents, Thomas said. The outside contractor handling the interviewing has begun a campaign of “active outreach,” sending out letters to residents and building managers in the eligibility area, she said. Letters are being sent out in batches of 2,000, Thomas said, and the department aims to send out as many as 100,000.

In addition, the Department of Health has tweaked its publicity campaign with a less catchy but more inclusive slogan. The phrase “I was there September 11th” has been widely used in flyers, newspaper ads and mass transit posters. Some worried that this phrase was misleading, since groups of workers and residents are eligible even if they weren’t Downtown on 9/11.

The city recently added business cards with the phrase, “Evaluating the long-term health effects of 9/11.” This slogan will also be used in online banners that will link to the registry Web site. While the “I was there September 11th” posters will remain up, Thomas said, this new phrase should help make people aware of the eligibility criteria.

A new ad campaign, with different posters, will be unveiled some time next year, said Deborah Walker, the project director of World Trade Center Health Registry, in a telephone interview. The department had always planned different phases of media outreach during its recruitment period, Walker said.

The Department of Health will continue to enroll participants in the registry until next August. Before then, it will not release detailed information on its findings so as not to bias the pool of applicants, officials said.

The department has secured funding for the registry for the next four years, Thomas said, and administrators will contact participants periodically to ask about their health and inform them of other studies they may want to join. Officials have said they hope to continue the registry initiative for 20 years.

“I don’t see that there’s any reason not to register,” said Fredric Bell, a participant who was at a conference on Water St. on the morning of 9/11. Bell, the executive director of the American Institute of Architects’ New York chapter, is one of the founders of New York New Visions, a group of professionals advising officials on W.T.C. site plans.

Even people who feel completely healthy, and residents who had little or no visible W.T.C. dust in their apartments, 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).





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