A new CDC research center aims to better understand the possible health effects of those 21 years or younger at the time of their 9/11 exposure.

For the past two decades, the World Trade Center (WTC) health program has pioneered research exploring the health effects of people exposed to the toxic dust and trauma of the 9/11 attacks. Most of this research has focused on people exposed as adults: first responders, emergency personnel, and community members.

Yet some 40,000 children were living in lower Manhattan when hijackers brought down the WTC Twin Towers. The resulting environmental fallout from pulverized buildings that blanketed the area would later be linked to a host of acute and chronic health conditions. Despite this, no systemic study has attempted to fully understand and track the health consequences in the youngest survivors. 

That has left a glaring gap in how exposure to the toxic dust and environmental contaminants affected babies in utero, infants, children, and young adults – a disparity that the Centers for Disease Control and Prevention (CDC) is seeking to close through an Early Life Exposure Research Center.

CDC described the center as “an important first step in addressing this need.” Earlier this year, researchers from the center wrote in an American Journal of Industrial Medicine commentary that ‘[c]ommemorating 25 years since the September 11, 2001, terrorist attacks in New York City allows us to recognize the successful collaboration of community, labor, academia, and government in creating a unique program to monitor and treat environmental health effects in a population of responders and civilian survivors,” but that this September offers an opportunity to “recognize and remedy a gap” in understanding exposure in the youngest survivors. 

The youth research cohort is the result of a December 2022 Congressional mandate to the CDC to track emerging health concerns for those under 21 years old during the attacks.

The news of a research center dedicated to the youngest exposed to 9/11 contaminants comes after a year of turmoil for the CDC, with widespread reductions in workforce across federal agencies.

In February, Department of Government Efficiency (DOGE)-related efforts led to a 20% reduction in WTC program staff, prompting outcry from New York lawmakers, and concerns that certifications to allow treatment of new conditions and cancers would be delayed. 

Decades of research to support survivor and first responder health

The 9/11 attacks released unprecedented quantities of complex mixtures of chemicals into the environment. The years of advocacy by affected communities and academics resulted in the passage of the James Zadroga 9/11 Health and Compensation Act–the basis for the WTC Health Program. 

The program was created in 2011 by the CDC’s National Institute for Occupational Safety and Health to provide medical monitoring and treatment of certain WTC-related respiratory diseases, cancers, and mental health conditions. It also funds research into health conditions associated with exposure to dust, debris, and smoke from the 9/11 attacks in New York, Shanksville, and the Pentagon.

In the 25 years since the devastating attacks, more than 1,500 scientific publications have documented the health effects among 9/11-exposed populations, the CDC said.

Among the health effects explored were conditions of the lungs and respiratory tract, cancers, and mental health disorders. This research provided the foundational work for determining which kinds of conditions were linked to 9/11 exposure.

Yet, the authors write that “only a small percentage of those publications have focused on individuals potentially exposed at a young age.” The research that does focus on children found higher rates of asthma and respiratory symptoms among children exposed to the 9/11 dust cloud in Manhattan.

Other studies focused on the negative cardiometabolic and behavioral effects, cancer development, and exposure to toxic forever chemicals. 

But experts and advocates argue that this research only paints a partial picture of the poor health effects children exposed to the disaster may suffer.

“We need to understand the cognitive and neurodevelopmental impacts,” said Dr Joan Reibman, a pulmonologist and professor at NYU Grossman School of Medicine, and an author on the paper arguing for more research. “We need to understand cancer incidence and the characteristics of cancer in this group.”  

Reibman also pointed out that most of the past studies have focused on male populations, leaving a “significant gap in our understanding of the impact on reproductive health.” 

Attention turns to the youngest people exposed

Researchers have long noted that children react differently to chemical exposures than adults. That’s because they experience larger exposures relative to their body size–and their bodies are less able to eliminate chemicals, the CDC said. Children can also have higher exposure to hazards because of crawling, putting their hands in their mouths, and faster breathing rates, said Reibman, whose research focuses on the health effects of WTC chemicals. 

Reibman also notes that though these survivors have a longer lifespan, gives more time for disease to develop, few have been tracked in formal studies.

“Both the WTC Health Program and the [New York City] WTC Health Registry were open to those exposed at a young age, including those exposed in utero,” she said, pointing to the respective CDC and New York programs.

However, Reibman explained that relatively few individuals meet these criteria. Only about 2,400 survivors are enrolled in the CDC program, while 3,200 are enrolled in the NYC program. This prompted a “concerted effort,” Reibman said, to enroll more people into the programs, ultimately leading to a 2022 amendment of the Public Health Service Act to expand the cohort size to include those within 1.5 miles of the WTC sites.

Challenges in studying 9/11 exposures 25 years later

Reibman and others acknowledged the difficulties in piecing together a study large enough to link certain exposures to health outcomes. The WTC Youth Research Coordinating Center “will have to overcome significant barriers to recruitment, which will require the involvement of community groups and novel recruitment techniques,” she said. 

Also needed are an interdisciplinary team of biostatisticians, epidemiologists, and disease specialists to determine the impact of exposures on disease.

Captain Matt Karwowski (Commissioned Corps of the US Public Health Service), chief of the research and evaluation branch at the WTC Health Program, told Health Policy Watch that enrollment would begin after the coordinating center is fully established.

Image Credits: US Coast Guard/Brandon Brewer, US National Archives/ Paul Morse, Courtesy of the George W. Bush Presidential Library, Kelly Sikkema, DHS/Benjamin Applebaum.