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 survey’s 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 registry’s 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 that’s 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? We’re 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: “It’s impossible to say ten years down the road what’s going to turn out to be the most important health consequence.”