Jan. 29 Deadline for Public Comment on Youth Cohort for World Trade Center Health Program
The federally administered World Trade Center Health Program has extended the deadline through which it will accept public comment on the creation of a Youth Cohort until Monday, January 29. The program proposes to track the health of people exposed as children to toxic debris from the terrorist attacks of September 11, 2001. Anyone wishing to comment on this proposal should click here to submit a response.
The Youth Cohort was initially authorized in December, 2022, when an amendment to a federal funding measure provided for a Research Cohort for Emerging Health Impacts on Youth (defined as people who were 21 years of age or younger on September 11, 2001), with a four-phase rollout. Currently, Phase I seeks to gather information from educators, scientists, and community members on options for establishing a youth cohort that will support future research. Phase II will use this information to develop a strategy for establishing the youth cohort. Phase III will seek the opinions of the community in ranking these options. Finally, Phase IV will begin implementation of the Youth Cohort.
For now, the Health Program is seeking insights from the public on several issues: health conditions (along with potential social and educational impacts) that may be priorities for future research on young people; ideas about outreach, recruitment, retention, and community involvement; ideas about any potential partnerships in establishing the Youth Cohort; and whether the four-phased approach described above is comprehensive and adequately incorporates community involvement.
“People who experienced September 11 as children remain grossly understudied,” explains Kimberly Flynn, the director of 9/11 Environmental Action, a non-profit advocacy group whose mission is to ensure that those who were affected physically or emotionally by the attacks receive appropriate care. “Young survivors, exposed to the disaster as children, are now entering the conversation. They will play a major and meaningful role in shaping cohort-related plans.”
In September, Congressman Dan Goldman hosted a Town Hall meeting focused on people who experience September 11 as children. At this session, Dr. Joan Reibman, the medical director of the World Trade Center Environmental Health Center (which is part of the federal World Trade Center Health Program) said, “children have special risks that are related to chemical exposures, compared to adults. The body’s biologic makeup differs from adults. For example, many of their systems are just developing. The lung is not fully developed until children are about age four. The brain is continuously developing. So clearly, as you get different exposures, it’s going to impact their systems differently. Also, per pound of body weight, children breathe more air, drink more water, and eat more food, than adults. They also metabolize chemicals differently, so they may not break down contaminants at the same rate as adults. And child-specific behaviors may create different routes of exposure. Children may be crawling, so they do a lot of touching of whatever is on the floor. They put their hands in their mouth all the time.”
According to official tallies, there were 41 elementary, middle, and high schools operating in the exposure zone (roughly, Manhattan south of Houston Street) on the morning of September 11, 2001, as well as multiple colleges and universities. The precise number of students enrolled in those schools in unknown, as is how many attended school on that day, or in the weeks and months that followed.
“We don’t know exactly how many, but we know that there were many, many, many thousands who were younger than 21 with potential for exposure,” Dr. Reibman acknowledged.
One reason a Youth Cohort is needed, she explained, is that among the 15,000-plus patients currently enrolled in the Health Program, only about four percent (638 enrollees) were younger than 21 on September 11, 2001. Among this small group, however, there are some troubling preliminary indications, including elevated levels of serum dioxin, furan, and perfluoroalkyls. “We can tell you that most of the certifications for those less than 21 include airway diseases, such as asthma, rhinitis, and sinusitis,” she continued. “And, as in our whole population, an increased number of people are referring themselves in for cancer certifications.”
In that subset, according to data provided by Dr. Reibman, there have been 18 cases of thyroid cancer, eight cases of breast cancer, six each of Hodgkin’s lymphoma and leukemia, and four each of non-Hodgkin’s lymphoma and cancers of the head or neck, as well as 14 other cases of various cancers.
The youngest children in the vicinity of the World Trade Center, newborn infants 22 years ago, are now graduating college. Children who were in elementary or high school in the autumn of 2001 are today in their 30s. Very little data exists about how their health has been affected by exposure to more than 2,500 contaminants (including asbestos, lead, mercury, dioxins, crystalline silica, cadmium, and polycyclic aromatic hydrocarbons, along with pulverized concrete and glass) now known to have filled the air and coated every surface for hundreds of yards in all directions. One problem that the Youth Cohort seeks to address (at least in part) is that there is currently not centralized list of names and contact information for such young people.
One may sign up to receive email updates from the Centers for Disease Control and Prevention on the progress of Youth Research Cohort development here.