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Eyes on 9/11 responders' cancer data

Marvin Bethea poses for photograph at his childhood

Marvin Bethea poses for photograph at his childhood home in Greenlawn, New York on August 17, 2005. Credit: Joel Cairo

A decade after the terror attacks on the World Trade Center, the fear of cancer stalks first responders who worked in the toxic, debris-filled air.

"We're waiting for the shoe to fall and hoping it doesn't," said Dr. Philip Landrigan, director of the World Trade Center Monitoring and Treatment Program at Mount Sinai Medical Center in Manhattan, which coordinates the seven clinical centers that have screened more than 30,000 first responders since 2002 and is tracking cancer cases.

Cancers take a slow route

"The data aren't showing an increase but I would add the word 'yet,' " Landrigan said. Many forms of the disease can take decades to develop. And because Sept. 11 was an unprecedented event that exposed thousands to a unique toxic brew, no one can predict the long-term effect.

"We don't really know the complexity and the constituents that people were exposed to," said Dr. Benjamin Luft, director of the Long Island World Trade Center Medical Monitoring and Treatment Program, which follows about 5,000 Long Islanders.

Even without large published studies, the early signs are troubling. Hundreds of cancers have been reported among first responders, and some deaths have been classified as presumed linked to work at Ground Zero under a 2005 state law that entitles families to receive line of duty death benefits and pensions. The death of former FDNY Fire Marshal Steven Mosiello of Massapequa Friday from esophageal cancer is classified as presumed linked to the attacks' aftermath, the FDNY said.

A crucial report

In the next week, the National Institute for Occupational Safety and Health is expected to release a review of scientific and medical data to date on cancer and its effect on the nearly 60,000 people who worked at Ground Zero after the attacks.

The issue is crucial because of the fear that the human toll from Sept. 11 could continue to rise. What's more, the potential financial cost could be huge: Under the $4.3-billion James Zadroga 9/11 Health and Compensation Act, cancer is not covered. That could change with a major study that shows an increase in cancer.

But so far no large study has been published that has looked at the cancers developing among first responders to see whether more have occurred than expected compared with a similar demographic. There aren't even complete numbers publicly available on how many first responders have the disease.A New York State Department of Health study -- the only one by a health department in the tri-state area -- following all deaths among first responders stopped tracking them in 2009, when federal funding ran out.Firefighters being studied

The most anticipated study is one following 16,000 city firefighters. Dr. David Prezant, chief medical officer for FDNY, denied a published report in May that claimed the study had found an increased incidence of cancer among those being monitored. Prezant, who would not comment for this article, said at the time no conclusions had been reached.

He would not comment recently on whether the study was to be published in the medical journal The Lancet, which has put out a call for papers for a special issue dedicated to research about Sept. 11.

Showcase of new research

A conference is also planned for mid-October by a World Trade Center consortium of researchers to present new research. Having timely and reliable information about cancer is key to enabling first responders to get on with their lives, Luft said.

Marvin Bethea, 51, a former paramedic from West Hempstead who survived the collapse of both towers, reflects the fear of many first responders. He said that having his asthma, sinusitis, depression and post-traumatic stress disorder treated and covered is "a godsend." But cancer is his big worry. "People are dying," he said. "I pray to God every day I don't get cancer."

There's no indication that Bethea's medical conditions put him or others like him at increased risk of cancer, Luft said. Rather, it's the exposure at Ground Zero that is the cause for concern.

"When you're talking about the World Trade Center, you have a number of scenarios: the actual exposure directly causes cancer; the actual exposure works in synergy with something else, or it accelerates something [bad] that is already there," he said.

Having good information on cancer also has financial ramifications. Under the Zadroga Act, signed into law Jan. 2, cancer is not treated by the monitoring and treatment centers. Nor is it one of the diseases covered by the newly reopened $2.775-billion Victim Compensation Fund. However, Special Master Sheila Birnbaum has said that if emerging science shows a correlation between exposure at Ground Zero and cancers, she is open to reconsidering that.

Some are impatient with doctors and officials, believing they should be less concerned with publishing pristine data and more with helping those suffering and dying by allowing cancer to be treated and compensated for under the Zadroga Act. "When is there going to be enough data? When they're all dead?" asked labor lawyer Victor Fusco of Woodbury, who has represented about 830 first responders.

"We're between a rock and a hard place," said Dr. Jacqueline Moline, director of the Queens World Trade Center monitoring program and chair of population health at North Shore-Long Island Jewish Health System. "Responders are trying to find answers and wondering if what they did caused cancer. As clinicians, we want to give them answers, but as epidemiologists we have to be concerned about how the data are gathered. . . . What standards do you hold it up to?"

Luft said he supported not waiting decades before all the data are in. "To establish a clear association scientifically is a very high hurdle and in the interim many patients may suffer," he said. "I think as a society we need to ask ourselves whether people who act altruistically on our behalf deserve special consideration."

Any major study that shows an increase in cancers among first responders could increase the burden on the limited funds allocated in the Zadroga Law.

"Adding cancer . . . will prove that $2.8 billion is not enough," said John Feal, head of the FealGood Foundation, a first responders' advocacy group. He said that of 847 responders who filled out forms for the foundation in 2009, 78 reported having cancer. "If they truly want to compensate for these people getting sick and dying, they need to add a couple of zeros," he said.

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