Tammy Kaminsky can still remember the taste of benzene, a carcinogenic byproduct of burning jet fuel. For the nine months following the 9/11 attacks, she volunteered for eight hours at St. Paul’s Chapel every Saturday, just around the corner from Ground Zero in New York City. She breathed in cancer-causing toxins, such as fuel fumes and asbestos, from the fumes and ashes that blanketed a pop-up clinic where first responders could eat, take a nap or get medical care. could.
But in 2015, when Kaminsky, a chiropractor living in West Caldwell, New Jersey, was diagnosed with uterine cancer, she didn’t get the kind of help other volunteers had. Although Kaminsky, 61, and her doctors believe the cancer is linked to her time voluntarily after 9/11, the federal health insurance and surveillance program will not cover her treatment for endometrial cancer — or the attacks toxic to her. For anyone exposed to the substances who then developed that form of uterine cancer.
This may change soon. In November, an advisory committee unanimously approved a recommendation to add uterine cancer to the list of diseases covered by the program for first responders and those around terrorist attacks. It is the fourth most common cancer in women. But, according to the advisory committee, it is the only cancer the program does not cover. The program’s administrator is expected to make a final decision by the middle of 2022.
Hormone-related cancers can develop when a person is exposed to endocrine-disrupting chemicals, including benzene, which were found in dust lying in Lower Manhattan for months after the 9/11 attacks. According to the American College of Obstetricians and Gynecologists, such chemicals are disproportionately harmful to women.
The World Trade Center Health Program determines which conditions will be covered primarily by using longitudinal data from patients in its registry. Enrollees do not have to prove that their medical condition was caused by the attacks and their aftermath; Instead, the program studies which conditions are most prevalent among members.
But it begs a math problem: Although the Centers for Disease Control and Prevention estimates that at least 500,000 people were exposed to toxic substances from the attacks, women make up only 22% of the program’s 109,500 enrollments.
The majority of those registered were first responders, a field dominated by men. Although people who were in and around Ground Zero, including residents, students, and office workers, represent a greater proportion of the total number of people directly affected by 9/11 than first responders, they needed both treatment and Very little representation is given in the program for data storage. Called “Survivors” by the program, they make up just 28% of enrollments.
It can never be proven that Kaminsky’s cancer arose from the exposure he had in his volunteer shift. But advocates and experts have urged that uterine cancer be included in the program, they say, to collect data on women’s hormonally driven health conditions in general, or their possible correlation to 9/11. Not enough women are enrolled in it.
“They didn’t collect data on uterine cancer because they couldn’t,” Kaminsky said. “How can you tell there’s no data when you didn’t record it?”
Dr. Iris Udasi, chapter medical director of the World Trade Center Health Program at Rutgers University, said the exclusion does not necessarily mean that women’s health is not prioritized. She said it was more a side effect of how cancer was added to the list — individually, based on a predominantly male group of first responders who were originally tracked for health conditions.
But she’s pushing to cover it up based on new evidence that endocrine-disrupting chemicals increase the risk of hormone-related tumors, including uterine cancer.
Udasi pointed out that one form of uterine cancer is already covered by the program under the “rare cancer” category. There are two types of uterine cancer: endometrial, the kind Kaminsky had, and uterine sarcoma. Sarcomas account for just 10% of all uterine cancers and are grouped with other rare cancers covered by the program. Adding a more general form still requires a formal review.
“This cancer that had fallen through the cracks can now be covered up,” said Udasi. “At least, I hope so.”
Sunil Kamath, an oncologist at the Cleveland Clinic Cancer Center who studies cancer funding, said uterine cancer research has long been underfunded.
According to Kamath, three broad groups of cancers are generally abbreviated: gastrointestinal, such as cancers of the stomach and pancreas; genitourinary, such as adrenal and prostate cancer; and gynecological diseases, such as uterine cancer. “And the uterus is, honestly, probably the lowest, data I’ve found,” he said.
The lack of funding, Kamath said, is partly linked to the stigma that many patients see as “down-there cancer.” Even some clinicians condemn early diagnosis because of the relatively high survival rate of uterine cancer and minimize the discussion or prioritization of such cancers. But Kamath’s research shows little link between cancer incidence, its mortality rate, and funding for cancer. And once a cancer is on the funder-and-donor track, it tends to dominate the focus of marketing, messaging, and even clinical trials.
About 70,000 women are diagnosed with uterine cancer each year, and rates have increased over the past two decades. The survival rate is relatively high compared to other cancers, Kamath said, but drops sharply with late diagnosis.
This can create a false sense of security among general practitioners, who may not act aggressively at the first signs of symptoms. “But, obviously, that’s not the right way to think about it. Really we should be making a diagnosis as early as possible,” Kamat said. “It’s really important, perhaps more so than other diseases, that we catch this at a highly treatable stage.”
It’s a bad cycle even at the World Trade Center health program, said Kimberly Flynn, who leads several health advocacy groups for people living and working around Ground Zero. She has observed that a lack of research leads to a lack of longitudinal data, which have been used to justify excluding uterine cancer from the programme.
When the federal committee agreed to consider adding it, Flynn, along with his two-decade-strong contact list, identified survivors and first responders on the sidewalk who had been diagnosed with uterine cancer but were excluded from coverage. was denied. Of the eight cases it found, four were on the program’s radar. One in eight people have died of uterine cancer since then.
Kaminsky’s cancer is in remission after hysterectomy and chemotherapy.
“We don’t need research to show that there is health disparity,” Flynn said at a recent advisory committee meeting. “We need research to improve the current health disparity.”
This article was reprinted from khn.org with permission of the Henry J Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.