9/11 first responders health: Study of how Ground Zero exposure affected workers yields powerful results

More than 20 years after the Sept. 11 attacks, the volume of research on responders and survivors is substantial and growing, yielding sometimes unexpected, potentially powerful revelations about the long-term physical and mental effects of exposure to disaster.

PubMed, an electronic database of the National Library of Medicine, lists roughly 1,300 scientific papers about the World Trade Center with close to 60 published in the last year. The latest papers examine links between exposure to what doctors have called the “toxic cocktail” of gas and dust at Ground Zero and cancer, pulmonary and cardiovascular conditions, along with trends in substance use and post-traumatic stress disorder.

Monday is the 22nd anniversary of the attacks.

“There are so many questions still out there,” said Dr. Benjamin Luft, director and principal investigator of the Stony Brook World Trade Center Health and Wellness Program. “Think of the number of toxicants that were at the World Trade Center site. About 70 were identified, which is huge. Some of these are extremely potent agents that affect multiple systems … These are agents that affect both the development of cancer, autoimmune disease, neurodegenerative processes.”

The tens of thousands of participants in Stony Brook’s program and four similar programs in New York City and New Jersey may not follow the minutiae of every new study. But some keep themselves broadly informed, interested in their own health and the fate of others who served with them.

Carol Paukner, a retired NYPD officer from Miller Place, has visited the Stony Brook clinic and participated in its research almost since it opened, she said. A multisport athlete before the attacks, Paukner was helping civilians to safety when one of the towers collapsed. She crawled out of the rubble. After multiple surgeries, she lives with blood cancer, sinusitis, PTSD, chronic obstructive pulmonary disease and back issues.

If the research can “help in the future with different illnesses, if they can change something to help someone else — like medication or how to handle a particular situation — anything that’s going to help someone else, that’s why I do it,” she said.

Chernobyl, Bhopal, Fukushima: these modern-era disasters also gave rise to reams of data. What makes Sept. 11 unusual, researchers say, is the scale and duration of continuous study. More than 90,000 responders and survivors participate in the World Trade Center Health Program. Stony Brook tracks data for about 13,000 responders who receive care at its clinics.

Intense public interest in the attacks themselves and in responders seen as heroes has helped ensure continued funding for study, said Sean Clouston, professor in Stony Brook’s Program of Public Health and the Department of Family, Population and Preventive Medicine who has partnered on a number of recent papers.

9/11 workers at risk for serious conditions

While most people exposed to the site are healthy, the rates of some serious medical conditions are far higher than in the general population, according to the research.

Another troubling finding, said Mark Farfel, director of the World Trade Center Health Registry at the New York City Department of Health and Mental Hygiene, which tracks 71,000 participants but does not directly provide health care, is that “conditions often co-occur — many people in our registry have more than one mental health condition, more than one physical health condition related to 9/11. Post-traumatic stress disorder often co-occurs with depression and asthma; people with persistent lower respiratory symptoms often suffer from PTSD, anxiety or depression.”

Investigators now have proof that “the more co-occurring conditions people have, the greater the impact on quality of life, functioning, unmet health care needs,” Farfel said.

Some of the findings are not yet fully understood. One recent paper adds to evidence that many responders are suffering mild cognitive impairments similar to symptoms of Alzheimer’s disease. One correlates prolonged exposure to the site to inflammation of the hippocampus, a brain structure that plays a major role in learning and memory.

Another proposes the trauma experienced by mothers who were pregnant and widowed on 9/11 was transmitted to their infants by the skewed rhythm of mother-child interactions. One suggests artificial intelligence can predict the emergence of post-traumatic stress disorder symptoms by analyzing language patterns in patient interviews.

Two decades into the work, some findings are helping to shape medical care, and not just for those who were at the site. The monitoring program model itself, which offers participants one-stop medical care, “is beginning to demonstrate quite clear benefits,” said Andrew Todd, director of the CDC/NIOSH World Trade Center Health Program General Responder Data Center at Mount Sinai, with 22,000 participants. “Lower cancer rates, lower overall mortality.”

As the cohort ages — the largest age group is now 55-64 — research is turning to topics like mobility, diet and exercise that can provide outsized health benefits.

Psychiatric impact of
9/11 remains

After multiple studies showed negative impacts of PTSD on a variety of physical diseases, Stony Brook hired nurse practitioners with certifications in psychiatry, Luft said. The clinic is also rolling out an A.I.-assisted phone system that will use concepts of the recent research. The system will “detect when patients are more in distress,” Luft said. Some A.I. models have shown success analyzing interviews as short as five minutes or a couple hundred words.

The university’s program draws about $20 million in annual federal funding for health care and research by about 20 scientists. Programs like Stony Brook’s have collectively yielded hundreds of thousands of data points about their participants.

Because researchers have access to data stretching as far back as 22 years, they can build longitudinal studies that make inferences about cause and effect of health developments. That can’t be done with cross-sectional studies that study people at a point in time.

“Even though they all shared one exposure, they have different trajectories through exposure, so we can look at whether choices made changed outcomes,” Clouston said.

That could mean tracking the effect of wearing a mask on the pile or not, he said.

The longitudinal approach has also allowed scientists to follow, for example, the health outcomes of responders whose exposure led to lung disease and to determine how connections between gastrointestinal and mental health disorders change over time.

One such study, for which Clouston was lead author, showed associations between World Trade Center exposures and prevalence of biological markers including neurodegenerative proteins in the brain. In a pool of 1,000 responders, 58% with dementia had at least one elevated marker; more than 3% had elevated levels of all the markers. That work could yield an alternative to current diagnostic tools.

Some of the most intriguing research focuses on emotional trauma, which took place not just on the morning of the attacks but, for some, weeks later or repetitively.

Up to 20% of the adults exposed to the attack had PTSD symptoms five to six years later, four times the rate in the general population, according to the New York City Health Department’s World Trade Center Health Registry.

Rates are higher for nontraditional responders, like the ironworkers who assisted in recovery, than for police. But there are subtler patterns too, as shown in work Dr. Adriana Feder, a psychiatrist and professor at Icahn School of Medicine at Mount Sinai and associate director of the WTC Mental Health Program, did with Robert Pietrzak, a Yale School of Medicine professor of psychiatry and public health, and others. Their work found differences in expressions of certain genes found in responders with and without PTSD.

“Because PTSD is a complex disorder, like most other psychiatric disorders, the cause is not one gene but a combination of multiple genes and environmental interaction,” Feder said. The findings don’t mean that someone with those gene expressions will develop PTSD, but the presence of some gene variants could mean higher risk of developing PTSD, she said. Eventually, the work could help develop therapies to combat it, she said.

Developing ways to cope with 9/11 PTSD

Other papers from her group could have more immediate practical implications. Several examine the therapeutic potential of guided use of the drug ketamine for treating PTSD and one highlights the importance of protective factors like social support in developing coping strategies for some people with PTSD.

Roman Kotov, a professor of psychiatry at Stony Brook’s Renaissance School of Medicine, said his research has shown little or no change in about half the participants who originally presented with PTSD; for participants who did experience change, most “shift toward improvement.”

A key finding was “many years after, it’s current life events that play a far bigger role in PTSD and mental health.” An acrimonious divorce or getting fired from work can bring out PTSD symptoms, Kotov said, while “positive circumstances can keep them in check.”

For Nesconset resident John Feal, a demolition supervisor who developed respiratory problems working at the site and has become an advocate and informal spokesperson for many who were affected by the attacks, the research is crucial.

It means new conditions can be added to the list of those covered by the World Trade Center Health Program and improvements to treatments so he and others like him “can continue to live in their 70s and 80s like they’re supposed to.”

While they benefit from some elements of the research, they are also “guinea pigs for the next disaster,” Feal said. “The more people get into this program, the more we help the future. God forbid there is another 9/11.But there will be another disaster and 9/11 is the model now.”