Uterine Cancer Finally Included on World Trade Center Coverage List
The 2011 World Trade Center Health Program provides no-cost medical monitoring and treatment for health conditions related to survivors' or first responders' proximity to the three 9/11 sites in New York City, Washington, D.C., and Shanksville, Pennsylvania.
In addition to dozens of physical and mental health conditions, the list of covered conditions included many different types of cancers, from breast and ovarian to bladder and colorectal. But it neglected to include uterine cancer until January 18, 2023. Since that date, the WTC Health Program includes uterine cancer, when all the types of the disease, including endometrial cancer, were finally added to the list.
Why wasn't uterine cancer on the list?
Uterine cancer is the most common type of gynecologic cancer and one of the deadliest. So health experts and advocates who’ve been pushing for uterine cancer’s inclusion are thrilled to see their efforts pay off after more than a decade.
When other cancer types were added to the list of covered conditions beginning in 2012, the program found "insufficient evidence" to support the addition of uterine cancer under the WTC Health Program’s Policy and Procedures for Adding Types of Cancer to the List of WTC-Related Health Conditions, according to Stephanie Stevens, a spokesperson for the office of the director at the National Institute for Occupational Safety & Health, which oversees the WTC Health Program.
"Uterine cancer is currently the only type of cancer not covered by the WTC Health Program," Stevens said at the time.
Lila Nordstrom was 17 and attending Stuyvesant High School, blocks from Ground Zero, on 9/11. Now 38, Nordstrom is the executive director of StuyHealth, an advocacy group that represents young adults affected by the 9/11 attacks and the ensuing cleanup by helping them apply for aid and compensation through various programs.
Nordstrom said the reason for "insufficient evidence" on uterine cancer is tied to the origins of the data.
"Almost all of the data that the covered-conditions list is based on comes from [9/11] first-responder health data," Nordstrom said. "The first responders were 90 percent male."
Nordstrom said other women’s health conditions are also missing from the covered-conditions list, including autoimmune diseases, which predominantly affect women, and pregnancy and reproductive issues.
"Uterine cancer is the most egregious oversight because every other cancer is covered," Nordstrom said. "All the other reproductive cancers are covered, and that includes all male reproductive cancers."
A larger pattern of gender disparity
Nordstrom said the omission of uterine cancer reflects the lack of research and attention paid to the disease in general—particularly because other women’s reproductive cancers, like ovarian and cervical cancers, are on the list.
"There is not much data on uterine cancer anywhere for anything," Nordstrom said. "It’s a condition that's been largely overlooked."
It's not that the connection between 9/11 and the disease doesn't exist, she added. No one endeavored to research it. The same can be said for health conditions affecting specific groups of women.
Recent studies brought uterine cancer and, more specifically, the racial disparities surrounding the disease to the forefront. Researchers from the National Cancer Institute indicate deaths from uterine cancer are rising among Black women.
Another study from the National Institutes of Health suggested a link between the use of hair-straightening chemicals and an increased risk of uterine cancer.
But historically, uterine cancer has been underfunded. Advocates like Nordstrom see this as part of a larger pattern of gender disparity in medical research.
"This is something that I think plays into a larger disadvantage that community members have in the World Trade Center programs, which is that the community that was impacted that are not first responders is much larger than the first-responder community, and it is significantly more female," Nordstrom said.
What were the effects of leaving uterine cancer off the list?
Before uterine cancer was added to the list this year, people with the condition didn’t have the same options.
"The people that are suffering right now from uterine cancer not only don’t have access to no-cost care through the program, but they also don’t have access to the same compensation that people who have cervical cancer would get access to," Nordstrom said in an interview conducted before uterine cancer's official addition to the list.
Fortunately, that lack of access changed with uterine cancer’s addition to the list.
People who’ve been accepted into the WTC Health Program who have a "certified WTC-related estrogen-secreting tumor can already have their uterine cancer certified as a health condition medically associated with the certified WTC-related estrogen-secreting tumor, assuming all other certification requirements, such as latency and exposure duration, are met," read the 2022 statement from the WTC Health Program.
"Ultimately, the STAC recommended that uterine cancer be added to the list and provided the administrator with its recommendation and rationale," Stevens wrote. "Based on the STAC’s recommendation and the scientific literature…the administrator has determined that the available information provides a sufficient evidentiary basis to propose the addition of uterine cancer to the list."
After weeks of public and peer review in 2022, the WTC Health Program reviewed and responded to all public comments, as required. The final rule went into effect 30 days after its publication.
The bottom line
Uterine cancer is highly treatable in the early stages. But for those with higher risk factors, consistent healthcare screening is advisable. The addition of uterine cancer to the list of the World Trade Center’s covered conditions is a step in the right direction.
