It takes less than a year for doctors to treat most patients with Hodgkin's disease. Ryan McCormick has been battling the lymphatic system cancer for four.
"Something's not right, either with me, the disease or the medicine," says McCormick, 32, of Verona, N.J.
McCormick was working as a paramedic at the emergency medical services command post at Ground Zero two days after the Sept. 11 terrorist attack. He spent 16 hours on the job.
He suspects his medical condition was at least aggravated, if not caused, by his exposure to toxins at the World Trade Center disaster site.
"There's no way you can tell us what was floating around down there was at all healthy," McCormick said. "There's no way. You're not supposed to see the air floating in front of you. You're not supposed to put on a respirator and have the canister clog immediately."
McCormick's claim echoes throughout New York and beyond. Tens of thousands of first responders who worked for days, weeks or months at the World Trade Center site are worried about their health.
They were exposed to a stupendous mix of compounds, according to clinical studies: soot produced by burning jet fuel; clouds containing cement dust, glass fibers, asbestos, lead, hydrochloric acid, polychlorinated biphenyls (PCBs), and pesticides; diesel exhaust from first-response vehicles; and smoke produced by both underground and above-ground fires that were not extinguished for three months.
About 71,000 people have enrolled in a World Trade Center Health Registry run by the New York City Department of Health and Mental Hygiene and financed by the federal government. They are being surveyed to assess the health status of people who were not working at the site as first responders. The results will not be known until next year.
"We really don't have a lot of good information about that non-responder population," Dr. John Howard, director of NIOSH, said Friday. "So I think it's important that the Congress always keep it on their agenda, always ask people like us, `What do you see? What's your data? Advise us.' It's an important public policy issue."
"Amazingly, every single state and 431 of the 435 congressional districts nationwide have someone in the World Trade Center Registry in New York City. This is a health emergency on a national scale, and it requires a strong federal response," Rep. Carolyn Maloney, D-N.Y., said Thursday.
Studies published out of the New York registry suggest a higher rate of disease for all types of survivors of the World Trade Center attacks, whether they were policemen, firemen, emergency medical workers, financial sector employees, or residents of lower Manhattan who simply fled the immediate area.
First responders who worked at the World Trade Center in the first year after the attacks already have at least one option: They are eligible for free health care under a federal program run by the National Institute for Occupational Safety and Health.
About 40,000 fire, police and emergency medical personnel had registered for the initiative, called the World Trade Center Medical Monitoring and Treatment Program, by March 31.
More than 6,500 are getting treatment for Sept. 11-related health problems, while more than 5,000 have been directed to mental health treatment.
The program covers respiratory illnesses, gastrointestinal ailments and mental health conditions but not cancer. And it is not open to school children, residents or financial sector workers who happened to be at or near the World Trade Center on Sept. 11.
McCormick now works as the director of disaster preparedness at the Saint Barnabas Health Care System in West Orange, N.J. He says he has excellent health insurance.
Although he says he is frustrated with the persistence of his own illness, McCormick says he worries about other people who may have been exposed to Ground Zero toxins. He contends they may be at risk of developing cancer, breathing problems or other illnesses years from now.
"I'm not wanting for health care. I've had every possible treatment available so far. Now I'm to the point that I'm enrolled in a study that my health insurance is paying for. But that's not the case for a lot of people," McCormick said.
In particular, McCormick says, he is concerned about people who would lose their employer-sponsored health care coverage once they are too sick to work.
The Health and Human Services Department has spent or obligated more than $778 million to assist health care providers treating and tracking people with World Trade Center-related health problems since September 2001, according to Dr. John Agwunobi, Assistant Secretary for Health at HHS.
But the Bush administration has failed to set up a system that would systematically identify, track and treat every person not just police officers and firefighters affected by Ground Zero toxins, according to lawmakers in both parties.
"My concern is for anybody who may have been exposed, whether they be first responders, children, workers or residents or anybody who just happened to be in the area at the time," said Rep. Charlie Dent, R-Pa. "I believe we need to take a look at this, to get a sense of anybody who had significant exposure. That's what we need to do, look at this whole issue in a comprehensive manner and go from there."
The Mount Sinai Medical Center, which runs a clinic to evaluate and treat people exposed to the contaminated air at the World Trade Center disaster site, in September 2006 published a controversial study.
It said that almost 70 percent of 9,442 first-response workers taking part in the survey had developed a new or intensified respiratory problem during or after their work at the World Trade Center site. The study claimed that cancer was a concern as well.
"The workers and volunteers who served New York City and the nation through their heroic service in the aftermath of Sept. 11 need continuing medical surveillance and follow-up, especially because some diseases, such as cancer, are of long latency," the study said.
But the Mount Sinai Irving J. Selikoff Center for Occupational and Environmental Medicine has come under sharp criticism for its data-collection methods, and for suggesting that cancer is a long-term threat, according to a report Friday in The New York Times.
Congress at the moment is trying to merge two bills on Sept. 11 health matters.
A measure sponsored by Maloney and Sen. Bob Menendez, D-N.J., would open the September 11th Victims Compensation Fund to firemen, police officers, emergency medical personnel, residents who lived near the World Trade Center, office workers, and students who developed illnesses tied to the attack.
Lawmakers first created the $1 billion victims' fund to pay compensation to survivors of people killed in the terror attack.
Maloney also has introduced a resolution urging the Health and Human Services Department "to prepare a long-term, comprehensive plan" to monitor all people exposed to the airborne toxins at the World Trade Center site and also to treat those who are sick or injured.
Dent says a draft bill has been circulated in the House that would tackle both concerns, opening the victims' fund to more people and financing health care coverage for a broader array of citizens exposed to Sept. 11 toxins."We're trying to get an understanding of all that is associated with this bill, including the costs," Dent said. "It seems like a good start to this process. Hopefully we'll arrive at a bill that everyone can support."