Cancer should be included among the illnesses covered by U.S. funds for responders to the Sept. 11 World Trade Center attack, though it’s not clear which types of the disease should qualify, the head of an advisory panel said.
Elizabeth Ward, chairwoman of a panel that will help decide who has access to two special federal funds, spoke after a hearing yesterday in New York in which about a dozen outraged cancer patients linked their disease to the 2001 terrorist attack that leveled the World Trade Center.
Many on the board “are in favor of listing at least some cancers of some systems as conditions,” Ward said at the end of a public hearing at the Jacob K. Javits federal building. “Whatever opinion we come to, though, we have to define a scientific rationale.”
It may be easier to explain how lung or esophageal cancers affecting responders to the trade center attack could be caused by inhaling burning building waste than, for example, to explain a direct link with blood cancers, Ward said. Other cancers may take longer to develop in the emergency personnel who responded to attacks, and may not be obvious for several years, said Ward, an epidemiologist and the American Cancer Society’s national vice president for intramural research.
The panel’s decision may open access for cancer patients to two funds, one set up to pay for health treatment and a second that reimburses victims for non-medical losses. The funds were created on Jan. 2, 2011, when President Barack Obama signed legislation reactivating a program that operated from 2001 to 2003 to help victims, rescuers, clean-up crews and others suffering from the attack and its aftermath. Cancer wasn’t included as an ailment that qualified a person for compensation from the new funds.
Ward’s comments capped a day in which cancer victims said they had no doubt their illnesses were tied to the time they spent at Ground Zero immediately following the attack.
Bruce Edwards, 55, of Ronkonkoma, New York, was one of eight communications workers who started right after the attacks restoring power to get the New York Stock Exchange running by Sept. 17. He was diagnosed with lymphoma at 50, the same age as another man in his group who has already died of cancer, Edwards testified at the hearing.
While the public hearing gave him hope, “it’s definitely too late,” he said. It is “disheartening” to hear that the committee needs evidence to prove his cancer is connected to that experience, Edwards said in an interview.
“In 2001 we were in dire straits,” he said. “People from every part of the country came here to help.”
The cancer patients talked about the contrast between politicians calling them heroes in public and denying them funding for health care.
A man who had dreams of coaching college hockey testified that he retired early because of his disease. A father of five hoped to live to see his daughters walk down the aisle. Some struggled with a hypothetical scenario -- if it happened again, would they help?
Tom Fay, 55, of Wall Township, New Jersey, said he would. “As a person who loves his country with every ounce of blood in my body, I’d do it again,” he said in an interview. “All I’m asking for is some help from my country.”
A study released on Sept. 1 in the journal Lancet found a 19 percent higher risk for cancer among first responders to the 2001 attacks. That report spurred politicians, disease advocates and cancer victims to urge that the law creating the funds be changed to include the disease as a qualified ailment.
Occupational Safety Review
A review by the National Institute for Occupational Safety and Health last year found there was too little evidence to prove a definitive link.
Before yesterday’s hearing, Sheila Birnbaum, special master of the $2.8 billion compensation fund that reimburses victims for non-medical losses, said she’d cover cancer patients if the committee decides they should be eligible for medical care. Such a move, though, would spread both funds thinner, and cause the money to run out more quickly, she said in an interview.
Fay, married with three grown children, lost his job after he advised an employer he had been diagnosed with blood cancer, he said in a telephone interview. The Jersey Shore University Medical Center in Neptune, New Jersey, agreed to treat him even though he didn’t have insurance, Fay said.
While Fay doesn’t know the total costs of the treatment, he said he received the cancer drug Neulasta, which he was told cost $5,000 a shot, once a day for 18 days. Neulasta, made by Amgen Inc., is prescribed to lower risk of infection in patients taking chemotherapy that suppresses the immune system. The drug drew $3.56 billion in 2010 revenue for Amgen, the world’s biggest biotechnology company, as its top seller.
Skin Cancer Test
Fay is now waiting for results from a biopsy taken Feb. 10 for possible skin cancer, he said.
He’s worried, he said, that the next time a disaster comes, nobody will help because of what is happening to those who responded on Sept. 11, 2001.
New York City council members Margaret Chin and Stephen Levin also gathered with first responder groups on the steps of City Hall before the public hearing to ask that cancer be added to the compensation programs.
They won a concession from Mayor Michael Bloomberg’s administration to release names of clean-up workers, so the committee could determine whether a link exists between their presence at the site and an incidence of cancer, according to a statement from Levin’s office.
New York city officials dropped confidentiality concerns and will provide Mount Sinai Medical Center with names of police department workers who participated in the recovery and clean-up operations once they receive permission from the individuals as part of an agreement to release more health data on the attacks, Deputy Mayor Cas Holloway said.
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Birnbaum said she has spent months telling responders with cancer there isn’t enough evidence to link their disease to their experience, and they aren’t eligible for the funds.
If cancer victims are added, “everyone would still get paid, but they would get paid less than they were awarded,” said Birnbaum, an attorney at Skadden, Arps, Slate, Meagher & Flom LLP in New York. “And we all may run out of money.”