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The World Trade Center Health Registry


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.” 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Health and Environment


Three Years of Rebuilding:
Ground Zero
Transportation
Economic Impact
Federal Aid
Security
Health and Environment

How the collapse of the Twin Towers will impact the long term health of New Yorkers is probably the most open-ended question remaining three years after the attack.

Within a week of 9/11, the Environmental Protection Agency announced that lower Manhattan residents were not at risk from the dust created by the collapse of the Twin Towers. Residents and businesses were told to clean dust from their apartments and wash ash-covered clothing separately, but rescue workers at the site were the only ones facing a real health risk.

In a report (in pdf format) issued last summer, the agency acknowledged that the White House's Council on Environmental Quality had "influenced, through the collaboration process, the information that EPA communicated to the public through its early press releases when it convinced EPA to add reassuring statements and delete cautionary ones."

The agency has received widespread criticism for these reassurances, and its subsequent cleanup in lower Manhattan.

Partially in response to this criticism, the Environmental Protection Agency established a panel to examine its own performance after 9/11, and look for unmet health needs that stem from the attack. It has started meeting, and over the next two years will develop a list of non-binding recommendations for the agency.

The city introduced a health registry to track the health of those who may have been affected by the disease. It has attracted over 50,000 people, whose health will be monitored, but not offered medical care.

These efforts have been met with various levels of cynicism - especially from those who have gotten sick.

A study published earlier this year referred to the collapse of the Twin Towers as the "largest acute environmental disaster that has ever befallen New York City." Still, the extent to which the disaster will affect the health of New Yorkers remains uncertain.

""The problem we have now is we don't know the long term, lifetime, health consequences. We just don't know, " said Paul Lioy of the Environmental and Occupational Health Sciences Institute.

The major health problems that have been linked to 9/11 are respiratory diseases like asthma, with some cases proving to be chronic. Nasal and sinus problems and gastrointestinal problems have also been tied to the attack. While no link to cancer has yet been found, and studies have found little danger of people developing cancer due to exposure to dust from the towers, some rescue workers who have developed the disease since 9/11 attribute their illnesses to the attacks.

New Yorkers also continue to suffer emotionally. A significant number of people developed post-traumatic stress disorder and depression after the attacks, and one Brooklyn hospital even saw a distinct rise in heart attacks, which its researchers attributed to post 9/11 stress.

Emotional problems have been on the decline since about six months after the attack, said Dr. Spencer Eth, director of the department of psychology at St. Vincent's Catholic Medical Center. The center has seen about 50,000 patients due to 9/11.

But over the last week, with the stress of the Republican National Convention, St. Vincent's has had to expand its hours to deal with increasing numbers of patients. Many thought they had recovered emotionally from 9/11, only to have their symptoms return.

"Right now, the conditions are there for the people to have that kind of flashback. Susceptible people will," said Eth. "The weather is warm and there are all these heavily armed people patrolling the streets."

A similar spike occurred after the crash of the Staten Island Ferry last year. Eth believes that these instances indicate a sensitivity that is part of a permanent shift in the psyche of New Yorkers.

"If you talk to people in Florida who have been through hurricanes, when the wind starts blowing, they get nervous; that lasts for years and years and years. People in southern California go on alert when they sense an earthquake, when the ground trembles a little bit," he said. "I think people in New York have been sensitized in the same way."

 

Food Borne Illnesses


Reports of a potentially dangerous E: coli infection among children in a Bronx day care center, coupled with two Yankees players benched by parasitic infestations, seems to have turned the summer into an unplanned Food Borne Illness Awareness Month.

According to estimates by the federal Centers for Disease Control and Prevention (CDC), 76 million Americans get sick each year from food--borne illnesses, more than 300,000 are hospitalized, and 5,000 die.

E:Coli

The city's Department of Health and Mental Hygiene announced in the beginning of July that it is investigating a recent outbreak of E. coli 0157:H7 infection in children who attended the "For Kids Only" day care center in the Bronx. After three children who spent time in the same first-floor room of the center came down with confirmed cases of E. coli 0157:H7, health inspectors visited the site. They are also investigating suspected cases among 18 other children who attended "For Kids Only."

The day care center voluntarily closed during the investigation and has cooperated with the health department. An article in the New York Post reported that For Kids Only passed annual health inspections in March 2004 and April 2003, and quoted parents who praised the center for cleanliness and health consciousness. Toddlers in day care centers, however, are particularly vulnerable to outbreaks of E. coli 0157:H7 and other foodborne pathogens, because they eat the same meals, crowd together, often fail to wash hands after use of the toilet, and frequently wear diapers, which can lead to spread of the bacteria if caretakers fail even occasionally to handle them using precise sanitary procedures.

The health department is also investigating one confirmed case of E. coli 0157:H7 in a local child who does not attend the day care center. All children associated with the outbreak live in the Bronx and range in age from seven months to just over three years.

According to city Health Commissioner Thomas Frieden, all of the affected children "are doing well at this point." As E. coli 0157:H7 outbreaks go, then, this one was relatively benign. The pathogen can cause much more serious health consequences, especially among young children and the elderly. According to the CDC, in three to five percent of cases, a complication called hemolytic uremic syndrome (HUS) can occur several weeks after the initial symptoms (which are themselves debilitating -- severe, bloody diarrhea and painful stomach cramps.) HUS is the most common cause of acute kidney failure in children.

In 1999, there were 18 cases of E. coli 0157:H7 reported among New York City residents. In 2002, only 2 cases -- both in a private home -- were reported, according to the CDC, which collects statistics on foodborne disease outbreaks from state, local and territorial health departments each year.

Some types of E. coli bacteria are normally found in the intestines of humans and coexist harmlessly with their hosts, even performing useful functions. E. coli 0157:H7 is not such a one. Normally found in cattle and similar animals, it typically spreads to humans when they consume food or water contaminated with microscopic amounts of cow feces. Hamburgers have often been implicated in the spread of E. coli 0157:H7 outbreaks, since ground flesh from literally hundreds of different cows may be mixed together in a single hamburger. To paraphrase an old saying, scraps from one sick cow can spoil the whole barrel.

Thorough cooking of meat and pasteurization of beverages like milk will generally kill the bacteria, but are not always performed. In the notorious 1993 E. coli 0157:H7 outbreaks traced to Jack in the Box restaurants in Washington State, the fast-food outlets failed to cook hamburgers infected with the bacteria well enough to kill the pathogen before serving them. About 700 customers fell sick and four died.

Once humans are infected, they can spread the infection to each other through poor sanitary practices, such as inadequate hand-washing after use of the bathroom and/or the handling of diapers.

The health department is asking parents of any children who attend the For Kids Only center to be on the lookout for symptoms of E. coli 0157:H7 infection -- abdominal pain, watery diarrhea that becomes bloody, irritability, and sometimes fever. The department urges parents of children who develop symptoms to immediately contact a physician. It advises parents to consult their own physicians, but they can also call 311 or the New York City Poison Control Center at (212) 764-7667 if they need more information or help finding alternative day care arrangements.

The health department also asks that parents who have children with diarrhea not take their children to daycare. And it has issued an alert to medical care providers requesting that all suspected cases of E. coli 0157:H7 infection be immediately reported to the Department's Bureau of Communicable Diseases by calling the Provider Hotline at 1-866-NYC-DOH1. (E. coli 0157:H7 is one of the so-called "reportable diseases" that the health department tracks in order to identify outbreaks and register them with the national epidemiological surveillance system.

To prevent infection with the bacteria, the city health department makes the following recommendations:

  • Do not eat undercooked hamburger or other ground beef products. Cook all ground beef and hamburger thoroughly. Make sure the cooked meat is brown throughout (not pink), and the juices run clear.
  • Drink only pasteurized milk and milk products.
  • Avoid unpasteurized apple cider.
  • Make sure infected people, especially children, wash their hands carefully with soap after using the toilet to reduce the risk of spreading the disease.
According to the CDC, each year E. coli disease strikes 73,000 people in the United States and kills around 60, mostly children. The elderly and the immune-compromised are also more vulnerable to bad outcomes. Most victims, however, recover without treatment in five to 10 days.

Intestinal Parasites

Meanwhile, pitcher Kevin Brown became the second New York Yankee in short succession to be diagnosed with an intestinal parasite. He has the dubious honor of joining teammate Jason Giambi, who was diagnosed with a parasite a few days earlier, after being sidelined the day before for lackluster performance. Brown had complained of fatigue and the unintentional loss of 15 pounds since the start of the season, while Giambi has suffered from fatigue, vomiting, and flu-like symptoms that have significantly impaired his playing.

Intestinal parasites are contracted from contaminated food or water, and Brown and Giambi are still trying to puzzle out where they might have picked up the bugs. Their teammates were spooked by the second diagnosis of parasites in their midst, but none of the other Yankees are showing symptoms, according to a New York Times report. Parasites can be treated with medication, which typically takes 7 to 10 days, but until the intestinal freeloaders are banished and the players' strength has returned, Brown and Giambi will continue to ride the bench, probably in considerable discomfort.

There were 14 cases of parasitic foodborne illness reported among New York City residents in 2002, the last year for which the CDC has published data. All of those were caused by Cyclospora, a one-celled, microscopic parasite that until the mid-1990s was thought to exist only in developing countries, particularly in tropical climates. In 1996, however, cyclosporiasis broke out in the U.S. and Canada and was eventually traced to contaminated raspberries grown in Guatemala -- underscoring some of the hazards associated with the post-NAFTA mass importation of produce from developing countries, particularly Central America, where parasitic infections are endemic. Anything eaten raw, such as fresh fruits, vegetables, and oysters, can be particularly dodgy unless scrubbed with extreme thoroughness.

The range of foodborne pathogens is dizzying, and more are being identified all the time, from bacteria to parasites to fungus. Some of the most common bacterial sources of foodborne illness include Salmonella, which now infests chicken eggs, is rapidly developing antibiotic-resistant strains, strikes 1,400,000 Americans annually, and kills 580; the rare but deadly Listeria monocytogenes, which lurks in undercooked meat and sickens only 2,500 Americans per year but kills 500 of them, or 20 percent of its victims; and Campylobacter, which lives on most raw poultry meat and infects 2,500,000 Americans annually, killing 124. Among parasitic organisms, Toxoplasma gondii or toxoplasmosis, which most people associate with cat feces but which can also be contracted by eating raw or undercooked meat, infects 225,000 and kills 750, and is particularly dangerous to the unborn children of pregnant women who become infected. Among the viruses, Norwalk-like viruses (of cruise ship fame) reign as the U.S.'s Deans of Diarrhea, sickening 23,000,000 per year and killing 310. (A case-fatality rate of only 6.7 percent, however, means that Norwalk-like viral infections, while extremely common, are not particularly dangerous to most people.)

The CDC's web page on foodborne illnesses lists a number of simple ways consumers can help protect themselves from these and other pathogens that can turn what should be gustatory pleasures into gastrointestinal nightmares.

Sue Wilson is a journalist who writes frequently on health and science topics for such outlets as the New York Times, WNET, and UNICEF

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 



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