Six years after the Sept. 11 attacks, the number of first responders and workers who are ill and are seeking monitoring and treatment continues to rise, a trend that surprises the medical professionals caring for them.
"When you are seeing this many people five or six years later, that catches everybody's attention," said Janet Levelle, the senior social worker at Stony Brook University Medical Center's Long Island World Trade Center Monitoring and Treatment Program based in Islandia and Nassau University Medical Center.
Dr. Benjamin Luft, who heads the Long Island program, said his group saw about 1,400 responders and workers from July 2006 to July 2007, more than twice what they expected. About 68 percent of those were first-time visitors, and more than 35 percent ended up with some treatment, including treatment for respiratory, gastrointestinal and mental health issues.
"Very honestly, in 2001 we did not expect this level ... ," Luft said.
Even as more seek help, issues about workers' compensation benefits and funding for monitoring and treatment programs persist. "We're at a sad point," said John Feal, president of Feal Good Foundation, an advocacy group for Sept. 11 workers. "After six years I thought we would be at the midpoint of recovery but we're still on the decline."
An estimated 40,000 people - about 5,000 of whom were from Long Island - were involved in rescue and cleanup following the attacks. About 21,000 of these people are being monitored by the World Trade Center Medical Monitoring and Treatment Program, which includes the Long Island program and four others in a federally funded consortium. The Fire Department of New York has given monitoring exams to 14,300 and is treating 2,000 for physical problems and following 3,000 for mental health issues.
Despite recent changes in the state's workers' compensation program, workers say they are still getting turned down for benefits. The state Compensation Board says the rate of denial for World Trade Center-related claims is 76 percent higher than that for other claims - a figure that has gone up in the last year.
Funding for monitoring and treating workers is also an issue. "My theme song is six years is long enough; we should be taking care of these people," said Rep. Carolyn Maloney (D-Manhattan). Maloney, along with others in the New York delegation, has secured an additional $50 million for 9/11 health-related issues for this year. Both the House and Senate have passed two separate bills that would, ultimately, give another $50 million to $55 million for 2008.
The passage of the bills would bring to about $277 million the amount of money allocated for medical help after the Sept. 11 attacks.
But Maloney said she is weary of scrambling for money - all of it has been appropriated through emergency funding. Along with Reps. Jerold Nadler (D-Manhattan) and Vito Fossella (R-Staten Island), Maloney expects this week to introduce legislation to create a formal federal program that would make the government responsible for data and research.
Maloney said this would stem criticism leveled in a recent New York Times article at the monitoring and treatment program at Mount Sinai Medical Center in Manhattan - the largest program in the consortium that has been responsible for collecting data. Critics spoke of "flawed" data collection and questioned whether doctors overstated the level of disease.
69% had respiratory ailments
A study published in September 2006 found that 62.5 percent of 9,442 workers and responders have upper respiratory problems and 46.5 percent have lower airway symptoms. In the study, researchers combined the two and, with overlap between the two groups, computed that 69 percent had respiratory problems.
"The reason there are questions about how many people are sick is that the federal government hasn't lifted a finger to answer those questions," said Maloney, who praised the Mount Sinai program as "a lifeline."
Dr. Philip Landrigan, head of the department of community and preventive medicine at Mount Sinai, defended the findings. "We thought it was perfectly reasonable to combine upper and lower respiratory problems which had the same cause," he said.
Long Island wasn't the only program with an increase in responders. Mount Sinai's program saw 3,000 new workers, said Dr. Jacqueline Moline, head of the hospital's program. What's more, medical and mental health problems remain for many who have already sought treatment, she said. A recent New York City Health Department survey found that World Trade Center rescue and recovery workers have 12 times the usual rate of asthma. About half suffer from either post traumatic stress syndrome or depression, Moline said.
Some get well enough to no longer need treatment "but not that large a number," she said.
Moline attributed the increase in visits to media coverage around last year's fifth anniversary and union efforts to get workers monitored in case they need to file a future workers'-comp claim. But others say it may be only now that some are yielding to illnesses they have been dealing with all along.
"Individuals who up to now have been denying the fact that anything is wrong are now getting sick to the point where they can't work anymore," said Michael Arcari, head of Faithful Response of Bellmore, which provides mental health help for Sept. 11 workers.
Wife blames leukemia on pile
Although Luft and Moline said there are no data linking cancers to working at the trade center site, stories abound of the disease. Patricia Rooney of Seaford lost her 42-year-old husband Philip in March after a three-year battle with acute myeloid leukemia. Rooney is convinced her husband, a New York City carpenter, became sick because of his more than 350 hours working on the pile.
Brian McCauley of Merrick said he's sure his weeks of rescue work on the pile helped cause a rare form of cancer that he is now battling. "There is no question in my mind," said McCauley, 40, who said he underwent surgery Sept. 11, 2006, to remove a nearly 20-pound tumor from the base of his spine.
McCauley, a former fire patrolman, said he will soon submit to a second operation to remove another tumor.
Regardless of proof, the fear remains, experts said. "Initially when we started, we were working with guys who were traumatized and grieving," said Thomas Demaria, head of Home Ground, a program for recovery workers and their families at South Nassau Communities Hospital in Oceanside. "That has shifted to helping guys working with their fear of getting sick."
And workers continue to be turned down. The cumulative rate of denials for trade center claims since 2001 rose from 28 percent to 30 percent as of last month, according to workers' compensation board spokesman Jim Smith. The general rate of denials for other claims is 17 percent.
Smith said much of the increase was due to workers filing before an August deadline for trade center-related injuries. The deadline has since been extended another year. "That number [30 percent] is very misleading," Smith said. "Some people filed because they thought they had better."
But some advocates are bitter about how hard they are still fighting for money they believe they deserve. "This proves that it [the system] does not work and it's not fair," said John Sferazo, head of Unsung Heroes Helping Heroes, an advocacy group for Sept. 11 workers. Sferazo, an iron worker who worked on the pile for four weeks and has severe respiratory and stomach problems, said he is still being turned down for some benefits.
But not all stories have ended unhappily. Gregg Lopez of Huntington Station, a burly truck driver, has post-traumatic stress disorder, hearing loss, scarring on his lungs and chronic sinusitis and rhinitis after working on the pile for 10 months. He also has a new lease on life.
Several months ago Lopez, with the blessing of his doctors, returned to his childhood passion: horses. Nancy Henderson, owner of Stanhope Stables in West Hills, Huntington, lent him a troubled 11-year-old thoroughbred mare named Titania. The two have become inseparable, and Lopez says for the first time in years he feels hope.
"I am able to laugh again," he said. "And I don't think about the World Trade Center."
40,000 estimated number of rescue and recovery workers at the World Trade Center.
5,000 estimated number of Long Island rescue and recovery workers at the World Trade Center.
21,000 now monitored by the World Trade Center Medical Monitoring and Treatment Center consortium.
14,300 members of the New York City Fire Department who have received medical monitoring exams
1,400 new workers this past year seen by the Long Island World Trade Center Medical Monitoring and Treatment Program
3,000 new workers this past year seen by Mount Sinai Medical Center's World Trade Center programStaff writer Laura Rivera contributed to this story.