Officials Slow to Hear Claims of 9/11 Illnesses
By ANTHONY DePALMA
Published: September 5, 2006
Five years after the World Trade Center towers collapsed in a vortex of dust
and ash, government officials have only recently begun to take a role in the
care of many of the 40,000 responders and recovery workers who were made
sick by toxic materials at ground zero.
But for many of the ill and those worried about becoming sick, government
actions — coming from officials whom they see as more concerned about the
politics of the moment than the health of those who responded to the
emergency — are too limited and too late.
The delay in assistance along with a lack of rigorous inquiry into the
magnitude of the environmental disaster unleashed that day is all the more
disturbing, they say, as the country faces a future in which such disasters
could happen again.
Dr. John Howard, who was appointed by the Bush administration in February to
coordinate the federal government’s 9/11 health efforts, readily admits that
costly delays and missed opportunities may have shattered responders’ trust
in the government.
“I can understand the frustration and the anger, and most importantly, the
concern about their future,” Dr. Howard said in an interview. “I can’t blame
them for thinking, ‘Where were you when we needed you?’ ”
A review of recent federal initiatives reveals a pattern of the government’s
not fully delivering what was promised. Dr. Howard’s office, for example,
has no full-time staff members assigned to 9/11 health issues. For the first
time, money for treatment — $52 million — has been included in the federal
budget, but even the officials responsible concede that it is not nearly
enough. And only last week did New York City release clinical guidelines
that could help doctors properly diagnose 9/11-related illnesses.
“They seem to be running from the people who are sick, not standing with
them and helping them,” said Representative Carolyn B. Maloney, a Democrat
who represents parts of Manhattan and Queens and has been critical of
federal efforts at ground zero. “And that is just plain wrong.”
One of the thorniest problems, and one reason officials have given for the
long delay in responding, is the difficulty of linking the dust and smoke to
specific symptoms and diseases. Making a medical diagnosis for illnesses
related to toxic substance exposure requires extensive and sophisticated
tests. Simply measuring the toxicity of the dust has proved to be
And state workers’ compensation systems, designed to handle common workplace
injuries like broken arms, are not well suited for determining an illness
that may take months or years to emerge.
Even so, clinical evidence of a serious health problem surfaced not long
after the attack. Initial studies of firefighters found that many had
developed “trade center cough,” a stubborn hacking that caused them to cough
up soot and dust particles.
A large-scale medical study came out in 2004, when the Mount Sinai Center
for Occupational and Environmental Medicine reported that more than half of
the first 1,138 workers it had examined had serious respiratory problems.
Workers also suffered gastrointestinal problems, acid reflux, asthma and
mental stress. (Mount Sinai is scheduled to release a far larger study
today, and it is expected to show serious ailments among many more workers.)
Successive studies through the years have found that the health hazards were
more persistent than first thought.
A Fire Department study released this year showed that firefighters had
suffered a loss in lung capacity in the first year after the attack equal to
what they might have lost over 12 years of normal duty. The department has
also found that the incidence of sarcoidosis, a serious lung scarring
disease, rose to five times the expected rate in the first two years after
An initial survey released in April of the 71,437 responders, residents and
downtown workers who signed up for the World Trade Center Health Registry,
run by the city and the federal government, showed that more than half said
that they had experienced new or worsening respiratory problems since 9/11.
And a Red Cross survey in May found that two-thirds of the responders and
survivors who sought help in coping with emotional distress believe that
grief still interferes with their lives.
One death — that of 34-year-old Detective James Zadroga in January — has
been formally linked by a coroner’s report to lung disease caused by trade
center dust. The families of at least six other responders who died believe
those deaths were also linked to toxic substance exposure at ground zero.
When Dr. Howard was appointed a few weeks after Detective Zadroga died, many
in the city were relieved to have a federal czar in charge.
But Dr. Howard, who was trained as a pulmonary specialist and is the
director of the National Institute for Occupational Safety and Health, has
not assigned a single one of his 1,300 employees to work full time on ground
zero medical issues, though about 20 work on such issues part time. And
though the institute has a budget of about $285 million, he has not received
any additional money to address the complex medical issues involved.
“I’m a czar without a budget,” he said.
Meanwhile, the need for treatment assistance has grown as more people have
become ill. While many rescue and recovery workers are covered by their own
health insurance, that coverage may become inadequate in the years ahead.
Many union workers, for example, can lose their coverage if they become too
sick to work, while most illegal immigrants who worked there had no
Some 16,000 union workers and volunteers have been examined through the
screening and monitoring program run by Mount Sinai, which began in 2002
with $11.4 million in federal money and was extended in 2004 for five years
with an additional $81 million. (Information about the program is available
But until last year, there was almost no money available for treatment
through the screening program. With $9.4 million from the Red Cross, Mount
Sinai doctors were able to treat 2,050 responders last year, offering them
therapy, medications and medical procedures in some cases.
Ms. Maloney and other members of the New York Congressional delegation, in
pushing for more federal aid, succeeded last December in getting the Bush
administration to restore $125 million in unused workers’ compensation
assistance that it had threatened to take back.
Of the $125 million, about $50 million was set aside for future workers’
compensation awards and about $52 million was split equally between two
treatment programs — one for firefighters and another for injured police
officers, union workers and other responders, but not office workers or
A working group appointed by Dr. Howard has not yet determined which
diseases will be eligible for treatment with the new money or whether the
money will cover hospital stays as well as office visits. But he recognizes
that it is not nearly enough to cover New York’s needs, let alone the
national treatment program he intends to start.
“You don’t have to go to cancers years from now, or asbestosis, to be able
to say ‘Gee, John, how far do you think this money is going to go?’ ” Dr.
Howard said. “I don’t think it will go that far.”
Besides the lack of money for treatment, the absence of timely public health
information made it more likely that doctors who initially saw sick
responders would be unprepared to treat what they found.
Doctors at Mount Sinai have said that up to a third of the workers they
examined were taking improper medications because their doctors had
misdiagnosed their symptoms. Severe sinusitis, for example, was treated with
antibiotics even though that condition might have been caused by chemical
burns from the caustic dust.
Yet it was not until Thursday, days before the fifth anniversary, that the
city issued diagnostic guidelines for the unusual illnesses linked to ground
zero dust, despite urging by medical specialists and labor leaders as early
as December 2001.
“This is a significant failure of the public health system,” said Micki
Siegel de Hernandez, health and safety director for District 1 of the
Communications Workers of America. Ms. Siegel de Hernandez contended that
the city delayed releasing the guidelines because it was worried that
acknowledging the extent of the health problems might increase its legal
Dr. Thomas R. Frieden, commissioner of the city’s Department of Health and
Mental Hygiene, said in an interview that the city had decided it made more
sense for the doctors at Mount Sinai’s screening program to put guidelines
on their Web site because they were seeing the workers while the city’s
medical staff was not.
Mount Sinai did publish guidelines in early 2002, but they did not carry the
weight of an official city advisory and had limited impact.
“We lost opportunities by not disseminating guidelines widely or at least
putting out a caution,” Dr. Howard said.
Dr. Frieden agreed that if they had been released sooner, the guidelines
might have helped clinicians make more accurate diagnoses.
“Would I rather have had the guidelines out sooner? Sure,” he said this
summer. “But it’s important to get this right.” He said the delay had
nothing to do with concerns about the city’s legal liability for sick
About 8,000 responders have sued the city and the big contractors who worked
for the city in the recovery operations, charging them with reckless
disregard for workers’ health. The city has asked a federal court in
Manhattan to dismiss the suit.
Although five years have passed, many questions about the environmental
disaster at ground zero remain unanswered. To this day, the government has
never precisely measured where the dust went, information that could help
determine the health impact on residents near ground zero. And it is unclear
whether cancers, possibly linked to the toxic materials, will arise in
future years, or if some of the sick will get better.
For now, among the sick and their doctors, the faltering and delayed
governmental response raises unsettling questions about whether the country
is prepared to handle a similar catastrophe.
“I think of that every time I come to New York,” Dr. Howard said. “Given
this betrayal of trust, this lack of being there at the time and all these
other things, I don’t know. We can try with what we have, but it certainly
is a different situation when you do it five years later.”