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Medical Views of 9/11’s Dust Show Big Gaps
By ANTHONY DePALMA
Published: October 24, 2006
http://www.nytimes.com/2006/10/24/nyregion/24toxic.html?_r=2&th&emc=th&oref=slogin&oref=login
In 2004, Kenneth R. Feinberg, special master of the federal Sept. 11 Victim
Compensation Fund, awarded $2.6 million to the family of a downtown office
worker who died from a rare lung disease five months after fleeing from the
dust cloud released when the twin towers fell. That decision made the
worker, Felicia Dunn-Jones, a 42-year-old lawyer, the first official
fatality of the dust, and one of only two deaths to be formally linked to
the toxic air at ground zero.
The New York City medical examiner’s office, however, has refused to put her
on its official list of 9/11 victims, saying that by its standards there was
insufficient medical evidence to link her death to the dust.
Mrs. Dunn-Jones’s case shows how difficult it can be to prove a causal
connection with any scientific certainty — and how even government agencies
can disagree. With thousands of people now seeking compensation and
treatment for dust exposure, the debate about the relationship between the
toxic particles and disease will be a central issue in the flood of Sept.
11-related lawsuits. Health experts are starting to document the
connections, but any firm conclusion is still years away.
Most of the suits involve workers who spent weeks and months on the pile at
ground zero and say the city and other agencies failed to protect them from
the toxic dust. Others involve residents who say they were made sick by dust
that settled in their homes. Mrs. Dunn-Jones was among those downtown office
workers caught in the initial fallout.
The question that arises in all these cases is straightforward: Can a link
between the dust and disease be proved with scientific certainty? The answer
is anything but simple.
“Certainty is a word we always dance around,” said Joseph Graziano,
associate dean for research at the Mailman School of Public Health at
Columbia University. For him, searching for the cause of disease is like
developing film. “At first you see a faint image of what the real picture
is,” Dr. Graziano said, “and then, over time, you see it with much more
clarity. In these relatively early times, the image is still faint.”
It can take decades to approach any degree of certainty. For instance, only
after years of observation did doctors agree that there was a strong link
between asbestos and diseases like asbestosis and mesothelioma.
In legal cases, “a reasonable degree of medical certainty” is considered the
gold standard in making a causal connection. Last week, a federal judge
cleared the way for thousands of workers’ lawsuits to go to trial. When the
cases are heard, any proof that does not meet that legal standard is likely
to be challenged.
But outside the courtroom, scientists say, even a less rigorous link could
be sufficient to warrant expanding the range of illnesses covered by
treatment programs, and to serve as the basis for issuing cautions to people
in high-risk groups. When the health effects are too new or the evidence is
too vague for a strong link, lesser indicators like the concurrence of
different studies have to be relied on.
For example, nearly every ground zero study shows that workers and residents
exposed to the dust in the hours after the collapse have suffered the worst
health problems. The consistency in that data has helped doctors monitor and
treat people since Sept. 11.
And it may also help explain why Mrs. Dunn-Jones, a dynamic civil rights
lawyer with the United States Department of Education, became so sick so
quickly. As she was swallowed by a whirling dust plume filled with asbestos,
benzene, dioxin and other hazards when the first tower fell, all she could
do was cover her nose and mouth as she fled from her office one block north
of the World Trade Center.
It was night by the time she got home to Staten Island. “She was in a state
of shock,” her husband, Joseph Jones, recalled. Her clothes were still
dusty, but he didn’t pay much attention. “I was just so happy to see her,”
he said.
For the next few months, life returned to normal, until Mrs. Dunn-Jones
developed a cough. In January 2002, the cough grew worse. On Feb. 10, she
suddenly stopped breathing and died.
Mr. Jones, 54, an assistant manager at a Brooklyn pharmacy, was stunned.
Then, when he received the official death certificate months later, he was
shocked to see an unfamiliar word — sarcoidosis.
“Even though I was in the medical field, I had never heard of it,” he said.
After reading several medical reports on sarcoidosis — including one by Dr.
David J. Prezant, deputy chief medical officer of the New York Fire
Department — Mr. Jones and his lawyer, Richard H. Bennett, wondered if Mrs.
Dunn-Jones’s mysterious death could be linked to 9/11 dust because
sarcoidosis, which produces microscopic lumps called granulomas, on vital
organs, is often associated with exposure to environmental hazards.
They took the case to Mr. Feinberg and the victim compensation fund, which
gave $7 billion to the families of those killed or injured on 9/11.
Mr. Feinberg initially expressed doubts about the claim and demanded to see
definitive medical evidence linking Mrs. Dunn-Jones’s sarcoidosis to the
dust.
Dr. Prezant, who declined to be interviewed for this article, was one of two
experts who testified at a hearing conducted by Mr. Feinberg. In the first
four years after 9/11, he found 20 cases of sarcoidosis in the Fire
Department, a rate of 80 per 100,000 in the first year (with treatment, all
are now stable), compared with a national rate of fewer than 6 per 100,000,
according to the American Thoracic Society.
The other expert was Dr. Alan M. Fein, a clinical professor of medicine at
the New York University School of Medicine. He, too, was skeptical at first,
but he said he changed his mind after reviewing Mrs. Dunn-Jones’s medical
record, including the autopsy report. “I’m comfortable saying her death was
caused by exposure to the dust,” Dr. Fein said in an interview.
In March 2004, Mr. Feinberg agreed, making Mrs. Dunn-Jones’s death the only
dust-related fatality recognized by the fund. Only one other death has been
formally linked to the dust: In April, a New Jersey coroner determined that
James Zadroga, 34, a New York City police detective, had died of a disease
similar to sarcoidosis, also caused by his exposure to ground zero dust.
Mr. Jones welcomed the settlement from the victim compensation fund, and
believes that his wife was a 9/11 victim as surely as if she had died in the
towers. He sent Mr. Feinberg’s decision to the city’s chief medical
examiner, Dr. Charles S. Hirsch, and asked that his wife be put on the
official list so that her name could be read on Sept. 11. Dr. Hirsch
refused, a spokeswoman said, because the available evidence did not prove
the connection “with a reasonable degree of medical certainty”— the highest
medical standard generally used in legal cases.
Mr. Feinberg’s decision had been based on a different standard: a
preponderance of medical evidence.
That was proof enough for the Staten Island Memorial Commission, which has
engraved Mrs. Dunn-Jones’s name on the bone-white memorial on the island’s
north shore.
Representative Carolyn B. Maloney, who has fought to get medical care for
9/11 victims, said the contradictory conclusions about Mrs. Dunn-Jones’s
death underscored the importance of deciding who has the final say on causal
links. “They should be medical decisions, not political ones,” she said,
suggesting that city officials may have a conflict of interest in making
such determinations since the city is a defendant in the ground zero
workers’ lawsuits.
She has introduced a bill to reopen the federal compensation fund to people
whose illnesses became known after the original eligibility period ended in
2003.
In the effort to collect definitive data, Dr. John Howard, the federal
government’s 9/11 health coordinator, recently circulated a draft set of
autopsy protocols that directs pathologists to use a standard of proof that
establishes both biological plausibility and unequivocal evidence of a
causal connection to the dust. But doctors and elected officials have said
those standards are so restrictive that almost no death could be linked to
the dust for years to come. A spokesman for Dr. Howard said the guidelines
were being refined.
In another effort, the Mount Sinai Medical Center, which has screened
thousands of ground zero workers, has begun a long-term study of the
incidence of diseases to identify any rates that exceed national averages.
“Right now we’re in the process of confirming every case of interstitial
lung disease, every cancer, every sarcoidosis that has been reported to us
by responders in their visits,” said Dr. Jeanne M. Stellman, director of the
public health program at Columbia University, is leading the data collection
project.
“We are actively trying to determine whether Detective Zadroga and Mrs.
Dunn-Jones are alone,” she said. “And we are trying to find a way to do this
that is scientifically correct while also being responsive to the needs and
fears of the communities involved.”
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