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Care and compensation in short supply for ailing and troubled 9/11 workers

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Care and compensation in short supply for ailing and troubled 9/11 workers<br />

BY RIDGELY OCHS

Six years after the Sept. 11 attacks, the number of first responders and workers
who are ill and 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 attention 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 them 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.

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
disorder 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 future compensation claims. 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.

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. “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’ claims for compensation 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 N.Y. 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.”

Staff writer Laura Rivera contributed to this story. Email Ridgely Ochs
at ridgely.ochs@newsday.com

Copyright © 2007, Newsday Inc.