Cancer Type Long Excluded from World Trade Center Health Program and Compensation Fund Now Covered
The World Trade Center Health Program announced on Wednesday that it has officially decided to expand its list of covered conditions to include all types of uterine cancer, including endometrial cancer. This means that women enrolled in the Health Program who have been diagnosed with uterine or endometrial cancer (provided they meet all other eligibility and certification requirements) are now eligible for treatment with no out-of-pocket costs. The new policy also means that responders and survivors suffering from uterine cancer will additionally be able to file for payment from the September 11th Victim Compensation Fund.
“This is significant as it not only provides access to life-saving care and treatment,” said Health Program administrator Dr. John Howard, “but also recognition for the women who sacrificed so much on and after September 11 that their diagnosed uterine cancer is a World Trade Center-related health condition. A critical gap in coverage for women in the program has been eliminated. All types of cancer, if determined to be related to September 11 exposures, are now covered by the World Trade Center Health Program, providing women equal access to the treatment they deserve.” This was a reference to the fact that cancers of the uterus were the last remaining type that were not eligible for treatment or compensation, an omission that activists and advocates have fought for many years to remedy.
Kimberly Flynn (left), the director of 9/11 Environmental Action, explains that in the fall of 2021, “Dr. Howard requested that the Scientific/Technical Advisory Committee [STAC] meet publicly to consider whether there was sufficient basis to add uterine cancers to the list of World Trade Center conditions. When the first meeting was announced, I called a friend who was a September 11 disaster relief volunteer and we pulled together a group of responders and survivors, some enrolled in the Health Program and some not, because they were told their cancers could not be certified as World Trade Center-related. At the September 2021 STAC meetings, these women addressed public comments to the panel, describing what it was like to fight to survive cancers they firmly believed were September 11-related, while fighting the demoralizing sense of being unfairly excluded from World Trade Center care.”
In November 2021, the STAC conveyed its recommendation to Dr. Howard uterine cancers be added to the list of covered conditions, along with a detailed scientific rationale accompanied by supporting documentation. Six months later (in May, 2022), Dr. Howard issued the proposed rule to add all uterine cancers to the list of World Trade Center conditions. Those plans then underwent mandatory independent peer review. The STAC also noted in its recommendation that, “other than uterine cancer, all cancer types now are covered as World Trade Center-related conditions.”
“The key point,” Ms. Flynn notes, “is that this long-overdue correction is underway. All uterine cancers will be added. Women have suffered in the decade-long gap from 2012—when the vast majority of cancers were added for coverage—up to now.”
Why did this take so long? Statistical groups known as “occupational cohorts” are the primary basis for research linking environmental exposures to cancers. And these groups are overwhelmingly male. This means that female responders (and survivors) are left largely unstudied.
Mariama James (right), a Lower Manhattan resident who is a STAC member, and who has led the charge for accountability, transparency, and support for survivors for almost two decades, said at the panel’s September 2021 meeting, “you cannot know how September 11 exposures are impacting women and children by studying only 50-year old men.”
Ms. Flynn adds, “because, under the Zadroga Act, the Health Program relies on research for adding new conditions for care, research gaps translate into care gaps. While we are pleased and relieved by the addition of this cancer that afflicts only women, we are calling for the program to do a better job of meeting the research needs of women and young adults—the people exposed to September 11 as children. The gaps in recognizing and caring for conditions that uniquely or primarily affect them need to be closed, so these groups need a new research focus.”
The Health Program estimates that the addition of uterine cancer to the list of covered conditions will translate into extra costs of between $1.7 million and $2.2 million each year, between through 2025. Benefits are expected to include, “improved access to care and better treatment outcomes than members would have in the absence of program coverage.”
The scientific evidence supporting this proposal comes down to four endocrine disrupting chemicals (EDCs) that are known to have been present in the toxic debris that spread across Lower Manhattan on September 11, 2001, and in the weeks and months that followed. Each of these are classified as “known or probable human carcinogens.” Adjusting for the relatively small number of female subjects in the population of responders and survivors who have been studied, while accounting for the incidence of uterine cancer, “support[s] the inference that some EDC 9/11 agents may also be linked to uterine cancer,” according to the Health Program’s analysis.
Women who have been diagnosed with uterine cancer at least four years after September 11, 2001, are urged to enroll in the World Trade Center Health Program immediately, and begin the process of getting their conditions certified as eligible for treatment. Women who are already enrolled in the Health Program and are experiencing symptoms of uterine cancer should contact their Clinical Center of Excellence (CCE) or the Nationwide Provider Network (NPN). Program doctors will review their symptoms and refer members for further evaluation, as medically appropriate. Health Program members who have already been diagnosed with uterine cancer should contact their CCE or the NPN to confirm that their cancer qualifies for certification and to learn more about treatment through the program.