Linda Gormley carries her passport wherever she goes-to work, the market, the movies-so she can flee to a safe corner of the world at the first sign of trouble. And trouble is what Gormley expects daily, ever since she emerged from the subway into a shower of burning World Trade Center debris.
Time has not eased Gormley's memories of the September 11, 2001, terrorist attacks, when her commute from Hoboken, New Jersey, to an administrative job on Wall Street turned into a run for her life. Gormley still has trouble sleeping and suffers from bouts of anxiety in crowds or when a plane passes overhead. A social drinker before 9/11, Gormley says she became an alcoholic over two years, drinking "almost constantly" to take the edge off her fears.
"Chunks of the building shot out the other side of the south tower from where the first plane hit," Gormley recalls. "I will never forget the feeling I had running through all that debris, seeing blood in the street, that something was going to fall on me and I was going to die."
Gormley, age 45, is one of thousands of people across the country suffering long-term mental and physical health consequences from witnessing the World Trade Center attack and from inhaling or swallowing toxic materials in the air for months following the towers' collapse. She's also part of the largest public health tracking effort in U.S. history-a collaboration among federal, state, and local health authorities, private aid agencies, and medical researchers.
Public health tracking programs. Among the goals of these monitoring and treatment programs is a better understanding of the immediate and long-term needs of survivors so that government and relief agencies improve their response to future disasters.
A more urgent goal is to develop protocols to help providers identify people whose health has been affected; especially as time passes and survivors relocate to other states, patients seeking care may not think to disclose their whereabouts on 9/11 or realize that current symptoms might be related. Unresolved trauma is especially hard to detect and may present as insomnia, depression, generalized anxiety, or substance abuse, according to Gerald McCleary, PhD, director of the 9/11 Mental Health and Substance Abuse Program, which has enrolled some 15,000 people.
"In 2002, when we first started, people said, Let me tell you what happened to me on 9/11,'" McCleary recalls. "Today, five years later, they say: Let me tell you what a wreck my life is.' The trigger event is obscured."
Although the monitoring and treatment programs cover many people, they're based upon self-reporting and voluntary enrollment. Health officials estimate as many as 400,000 people were close enough to the attack and its aftermath to have suffered health effects. Significant numbers of people now live in other states, making vigilance an issue for health care professionals nationally.
Potential health effects. "Respiratory and mental health issues with onset post-9/11 is what nurses and other providers should be listening for," says Sharon Campolucci, RN, federal project manager for the largest of the monitoring programs, the World Trade Center Health Registry, with 71,437 enrollees (http://www.nyc.gov/html/doh/html/wtc/index.html). "It's not the patient who is going to make the correlation five years out." Not everyone in the registry has symptoms, but in the early stage of epidemiologic findings, many questions remain unanswered, such as the influence of medical history and genetics on emerging illness.
Another unknown is what illnesses might develop. The dust cloud resulting from the towers' collapse contained known carcinogens and asbestos fibers; diseases related to these exposures typically take 15 to 20 years to develop, according to Jacqueline Moline, MD, codirector of the World Trade Center Medical Monitoring Program at Mount Sinai Medical Center in New York City. According to Moline and colleagues in the April-May issue of Cancer Investigation, the cloud included not only asbestos fibers but pulverized glass and concrete, including polycyclic aromatic hydrocarbons, polychlorinated furans, and dioxins. The New York Times reported on June 5, 2006, that there were more than 400 chemicals present.
Swallowing or inhaling these toxins is known to cause illness, including progressive and debilitating conditions like sarcoidosis resulting from lung scarring, according to Moline. Laura R. Marlin, RN, clinical research manager for a companion program at Mount Sinai called the World Trade Center Health Effects Treatment Program, says her staff is seeing chronic asthma and sinusitis, persistent dry coughs, headaches, and gastroesophageal reflux disease-attributed to esophageal damage from swallowing glass fibers.
"I think the surprise for all of us is the sheer persistence of these symptoms-the sinusitis that just doesn't get better," says Moline.
Patterns of illness. To date, only one death-New York City Police detective James Zadroga, age 34, from granulomatous pneumonitis-is officially attributed to 9/11 dust exposure. First responders are being closely monitored because of the length of time spent in the toxic environment of the collapsed towers, where fires smoldered for three months and every movement kicked up dust. But civilians also are having health problems, according to the April 7 issue of the Morbidity and Mortality Weekly Report, which includes a survey of 8,418 office workers who escaped the towers and nearby buildings. Fifty-six percent of the workers reported new or worsening respiratory symptoms, 23.9% had heartburn or reflux, 21% had severe headaches, and 10.7% had serious psychological distress.
The fact that there are separate programs at Mount Sinai for monitoring and treatment, and only some people (first responders, excluding firefighters, who have their own program) can get into them, is reflective of the larger research landscape, a confusing terrain that health officials hope to organize. In New York City alone, there are several 9/11 monitoring and treatment projects sponsored by a range of government and private agencies, including the American Red Cross, the National Institute for Occupational Safety and Health, the Agency for Toxic Substances & Disease Registry (ATSDR), the Centers for Disease Control and Prevention, the Federal Emergency Management Association, city health and mental health agencies, the New York City Fire Department, labor unions, and several hospitals and universities.
It took a while for anecdotal reports from health care providers to coalesce into recognizable patterns of illness, and longer still to organize and finance systematic responses, according to health officials. At the Mental Health Association of New York City, for example, operators noticed a spike in calls after 9/11 from people exhibiting symptoms of posttraumatic stress disorder or from relatives reporting alcohol and drug abuse by a survivor, according to McCleary. But it took close to a year to launch the 9/11 Mental Health and Substance Abuse Program.
Looking ahead. Campolucci, who in addition to supervising the World Trade Center Health Registry is ATSDR's deputy director for health studies, says one of the lessons of 9/11 is the need for quick and coordinated assessment of population health needs following a disaster. Her agency has developed a questionnaire for either public health departments or disaster response agencies, and designed for either local emergencies like a building collapse or major disasters like 9/11 and Hurricane Katrina. (See http://www.rapidresponseregistry.org.)
For Linda Gormley, the promise of a quicker response is welcome. "We were the forgotten people because we survived," she says. "We were supposed to be grateful and move on." Gormley eventually found her way to the 9/11 Mental Health and Substance Abuse Program, which assisted her with treatment for alcoholism and anxiety. She now spends her spare time assisting others still struggling with what they experienced that day. "These are the people I will spend the fifth anniversary with," says Gormley.
Irene M. Wielawski