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Air Today . . . Gone Tomorrow Article The World Trade Center
Health Registry
By Michelle Chen, Gotham Gazette,
December 12, 2004
When federal and city health officials announced in September, 2003 the launching of the
World Trade Center Health Registry, they expected it could be the largest public-health
investigation ever. Its aim was to understand the health effects of the September 11th
terrorist attack and its aftermath by tracking for two decades people who had been exposed
to Ground Zero.
More than a year later, there are some concrete findings about health complaints
and perhaps as many complaints about the survey itself.
The Findings So Far
The registry, a collaboration between the New York City Department of Health and
Mental Hygiene and the federal Agency for Toxic Substances and Disease Registry, has
enrolled more than 70,000 volunteer participants, people who resided, volunteered or
worked near Ground Zero.
According to initial health
data released recently:
47 percent of those analyzed complained of new or worsened health
problems immediately following the attacks.
These included respiratory irritations like shortness of breath (42 percent), wheezing (38
percent), and persistent cough (37 percent).
Over 40 percent of respondents in the area around Ground Zero (beneath Chambers Street)
reported eye problems as a result of the disaster.
Over 20 percent of all interviewees said they experienced severe headaches.
Eight percent of enrollees reported experiencing psychological distress,
including anxiety and depression, in the month preceding the interview. This is a 60
percent higher rate than that of the New York City population in general.
At a press conference announcing the findings, Health Commissioner Thomas R. Frieden
conceded that the prevalence of respiratory symptoms is not surprising in
light of previous research. However, the results do give new indications as to the scope
of the impact, according to Frieden: What this shows is that tens of thousands of
people had significant lung symptoms around the time of exposure to the WTC.
The Criticism
The most recent findings do not impress critics, who see several things wrong with the
survey.
Some, like Micki Siegel de Hernandez, director of occupation safety and health for New
York State for the Communications Workers of America, say it says nothing new.
Union members who worked at Ground Zero have been complaining of illnesses for years, and
previous studies have made all the same points.
Some charge it is not scientifically valid.
The New York Committee for Occupational Safety and Health, a non-profit advocacy
organization, has long questioned the surveys design: The population under
study is not scientifically determined; rather, it is a population of convenience.
Relying only on self-reported symptoms would not accurately reflect the effects of
exposure to WTC contaminants.
David Newman, an industrial hygienist with the committee, said the registrys design
overlooks distinctions between different potentials for exposure among various
subsets, including emergency responders, people caught directly in the dust cloud, and
people living, working or going to school in the area. Newman believes that since the
survey provides only an incomplete picture of those affected, the utility of the
data thats going to be collected is limited.
Some critics say there was inadequate outreach.
Despite efforts by community groups and registry staff to conduct special outreach to
minority populations, the demographics of the surveyed population are skewed. Enrollment
in the low-income, minority areas on the Lower East Side, at 4 to 10 percent of their
respective census populations, was significantly lower than enrollment in the relatively
affluent neighborhoods nearby, which ranged from 17 to 38 percent.
Kimberly Flynn, a leader of the advocacy group 9/11 Environmental Action, believes
inadequate public input and inadequate outreach led to a lack of public trust
and engagement in the project.
De Hernandez suggested that members of the Communications Workers of America were
generally uninterested in enrolling in part because neither labor nor the community
was consulted in any kind of a meaningful way prior to the development and implementation
of the registry.
Some critics say the money could be better spent on direct services.
The registry was intended strictly as a scientific inquiry, with no promises of treatment
for enrollees. There was no direct benefit to individuals for enrolling, said
Health Commissioner Frieden, but there will be a major direct benefit to New York
City as a whole and to other jurisdictions [that] deal with natural or manmade disasters
in the future. In other words, registry data might someday help society bone up in
preparation for the next 9/11.
The problem is, individuals still suffering from the last 9/11 think they are long overdue
for some direct benefits. Community members have expressed frustration that some victims
of 9/11 struggle with immediate healthcare and financial burdens that have not been
addressed to this day.
Past and Future Challenges
Philip Alcabes, an epidemiologist at Hunter College who served on the Scientific
Advisory Committee of the World Trade Center Registry, said the planners were challenged
from the beginning by many factors, including politics, bureaucracy, and, above all,
funding: the budget, he said, was woefully small for a project of this scope.
Whether the World Trade Center Health Registry will even fulfill its goal of tracking the
health of its enrollees over 20 years is uncertain. Currently, the Federal Emergency
Management Agency and the Environmental Protection Agency have committed $21.5 million,
which will only cover the next four years of research. Officials are hopeful that funding
will be extended.
In September, before the House Government Reform Committee, de Hernandez testified,
additional funding should not be provided for the continuation of the [registry].
Rather, this funding should be used to provide real medical services.
But experts say it would be premature to tie enrollment to treatment before potential
illnesses have been concretely defined.
Treatment for what? Were not sure yet, said Lorna Thorpe, deputy health
commissioner. The registry is empirically trying to identify what the health
problems are
in the broadest sense.
As Alcabes put it: Its impossible to say ten years down the road whats
going to turn out to be the most important health consequence.
Gotham Gazette - http://www.gothamgazette.com/article/health/20041201/9/1199
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