Volume 19 • Issue 5 | June 16 - 22, 2006

Residents’ 9/11 health funds running out, but survey continues

By Ronda Kaysen

Ann DeFalco’s 9-year-old son has asthma, which periodically keeps him home from school. Dolores Rode still takes medication for insomnia and, until recently, suffered from acid reflux. Lori Mogol’s husband has persistent upper respiratory problems and chronic allergies.

Rode, DeFalco and Mogol all have two things in common: they live within blocks of the World Trade Center and none of these ailments afffected their lives prior to Sept. 11.

“He’s got what most of the local residents have,” Mogol said of her husband, Richard Zimbler. The couple lives on Greenwich and Duane St., eight blocks north of the Trade Center site. “People here have much worse allergies. People have asthma who never had asthma before. Even people’s dogs are sick.”

With newfound attention being paid to the health of 9/11 rescue workers since a New Jersey coroner attributed first responder James Zadroga’s death to Trade Center toxins, local residents wonder what health risks they face and if their persistent ailments were caused by exposure to the toxins that covered their neighborhood.

“The needs of the residents have been ignored, particularly the youth,” said DeFalco, a Seaport resident. “It’s not just a disaster of 9/11, it’s the year that continued with the pocket fires, it’s the cleaning up and removal of debris, it’s the rebuilding construction. We wouldn’t have the rebuilding without 9/11. It continues.”

“Residents had a double blow in many ways,” said Gerry Bogacz, co-chairperson of the World Trade Center Survivors’ Network, an organization of more than 700 Trade Center disaster survivors. “Not only did they have the trauma of being at home or in danger, but the trauma of being out of their houses and having to throw everything out and start over again. You can see the psychological and physical impact on residents… In the next couple of years, we don’t know what [health condition] is going to present itself.”

Earlier this month, the city’s Dept. of Health and Mental Hygiene announced the first follow-up survey to its World Trade Center Health Registry, a voluntary registry of 71,000 survivors that was launched in 2003. In the follow-up survey, the registry will reach out to all of the original participants, either by mail or e-mail, delivering them a battery of questions about their physical and mental health five years after 9/11. Of the 71,000 participants, 12,624 lived south of Canal St.

“It’s so essential for any registrant to complete their follow up survey,” said Deputy Commissioner Lorna Thorpe in a telephone interview with Downtown Express. “It’s really the best and most accurate way for us to know the long term impacts of 9/11.”

Downtown residents had lingering health problems in 2003, the first survey found. Of the residents surveyed, 36 percent reported a persistent cough, 46 percent reported sinus irritation, 33 percent reported wheezing and 38 percent reported shortness of breath. “It’s concerningly high,” said Thorpe of the findings. “This is why the follow-up survey is so important.”

The Health Dept. hopes to release their findings about the mental health of Downtown residents this year, said Thorpe. Preliminary results show that the rate “is elevated,” she said.

The major shortcoming of the registry is it does not involve a medical exam and is based entirely on self-reported data, but it “is by far the largest attempt to monitor and track people who were affected by 9/11,” said Thorpe.

For workers, there have been other studies involving medical exams, but nothing like that exists for Downtown residents who experienced a different kind of exposure. “There is not a large study of residents,” said Thorpe. “This is a concern for residents.”

Residents who participated in the survey told Downtown Express of a vacuum of information available to them about the health impact on their community. “It would be nice to get updates once in a while,” said Dolores Rode, the Battery Park City resident who still suffers from insomnia. Rode, a registrant, was unaware of the follow-up survey. “It would help for my own well being to have a little more information than I do now about the different health problems” in the neighborhood.
The lingering question of who was exposed to what and how dangerous that exposure might have been often goes unspoken. Residents told Downtown Express of anecdotal stories they’d heard of people with asthma and respiratory problems, but few spoke of openly discussing health concerns with their neighbors.

“A lot of people have a hard time talking about it [health problems] right now,” said Catherine McVay Hughes, a registrant and chairperson of Community Board 1’s World Trade Center Committee. “That would be the worst thing that a mother could do — put their kid at risk — so some people might be in denial about it.”

“There were thousands and thousands of people affected by 9/11 and everybody lives in isolation,” said Janice Cilento, a therapist for World Trade Center Healing Services at St. Vincent’s Hospital, which has treated 80,000 residents, survivors, rescue workers and family members for mental health problems since 9/11. “The Health Registry would be helpful if they were able to share their information with the public and give out resources. It could be a resource center for people.”

Some registrants Downtown Express spoke to for this story were unaware that resources might be available to them at all. DeFalco’s son was four at the time of the attack and now suffers from asthma. The medical costs have often been a burden.

“Insurance companies are not paying for all the costs that are necessary. Sometimes we have to make other choices—choose another medication that is not as expensive, but not as effective,” said DeFalco. “The registry is not enough. We need a free clinic and it should include a pediatric unit.”

Any available resources are rapidly disappearing, with many programs ending in the fiscal year 2007, say advocates. “We’re very concerned about after 2007, what is going to be out there?” said Bogacz. “If people don’t get what they need, they could get into more serious situations.”

Thorpe hopes the findings from the Health Registry will keep avenues of funding open in the coming years. “We have to do everything we can to accurately describe the health conditions and needs of people who were affected by the event,” she said. “If there is careful, scientifically sound documentation, we have a much stronger chance of securing funding.”



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