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Health , US

The women left out of post-9/11 health care

by Susan Rinkunas September 10, 2021

This story was published in partnership between The Cut and the Fuller Project.

Leigh Calmar still can’t forget the dust. About a month after the Twin Towers collapsed on September 11, 2001, she returned to working downtown, at an architecture firm, after maternity leave. On the walk to her office building in the Financial District, she remembers seeing dust from the collapsed buildings. There was even dust in her office, on the window ledges and desks. “Our eyes would burn, I would breathe this stuff — it was just horrible,” Calmar says. “And it went on for months.”

It was this ubiquitous dust blanketing lower Manhattan in the days and months after 9/11 that caused both short- and long-term health problems for the neighborhood’s workers and residents, explains Dr. Joan Reibman, the director of the World Trade Center Environmental Health Center at Bellevue Hospital in Manhattan, which treats 9/11 survivors.

The dust contained harmful particles — like fiberglass, lead, and asbestos — that doctors believe are linked to cancer, and it has led to respiratory problems like chronic sinusitis, asthma, and pulmonary symptoms, Reibman says. The first death ever officially linked to 9/11 dust was that of a female lawyer who fled the area that day and died just five months later after experiencing lingering difficulty breathing. Other victims include Marcy Borders, a bank employee in the North Tower who became known as “Dust Lady” from a well-known photo of her covered in powder. She died in 2015 from stomach cancer, at age 42.

Women have struggled to be fully covered by the health program, battling the narrative that people with 9/11-linked health problems are predominantly male first responders.

In 2009, Calmar, then 48, was diagnosed with breast cancer. Though she had insurance, her chemotherapy and radiation treatments racked up huge medical bills. The federal World Trade Center Health Program (WTCHP), set up to support survivors and responders alike, wouldn’t be available until 2011. Now 60, Calmar is enrolled in the program, so if her breast cancer were to recur, the government would cover treatment. “That is such a relief for me,” she says.

That isn’t the case for every woman survivor facing health problems. Like Calmar, thousands of women survivors of 9/11 — who worked, lived or attended school near Ground Zero — have been diagnosed with cancer, asthma, mental health disorders and more. But only a few “women-specific” conditions, such as breast and ovarian cancers, have been officially recognized by the WTCHP. (Still, it took the WTCHP over a year to recognize ovarian cancer, and nearly two years to recognize a majority of breast cancers, as covered conditions.) Other conditions, like uterine and endometrial cancers and autoimmune diseases, are not covered. For two decades, women have struggled to be fully covered by the health program, battling the narrative that people with 9/11-linked health problems are predominantly male first responders, say advocates and survivors.

“The public sense of who deserved help and who had sacrificed for that help was very male-focused, it was very responder-focused,” says survivor and advocate Lila Nordstrom, who was 17 and a senior at Stuyvesant High School in lower Manhattan near Ground Zero on 9/11. “Community members never got access to that narrative, which meant that a lot of them never — because they didn’t see themselves reflected in any coverage — thought to seek help, never thought to advocate for themselves.”

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Though advocates estimate that survivors outnumber responders three to one, male responders make up nearly two-thirds of health-program enrollees, and most initial research to determine linked conditions was conducted on first responders, they say.

Like responders, survivors suffered both acute exposure on the day of the attacks as well as chronic exposure in the aftermath. But while responders automatically qualify for annual health-monitoring exams and treatment through the WTCHP, community members qualify for a one-time health evaluation and can enroll in the health program only after they start showing symptoms for a physical or mental health condition that’s been officially linked to exposure. At present, the program serves more than 100,000 responders and survivors, though the CDC estimates more than 400,000 people were “exposed to toxic contaminants, risks of traumatic injury, and physically and emotionally stressful conditions.”

As director of the Rutgers University WTCHP Clinical Center of Excellence, Dr. Iris Udasin primarily treats responders. She notes little clinical distinction between them and survivors: “I think if you’ve seen elevated diseases in the responders, you’d see the same things in the residents of the community.”

Related: More health coverage from The Fuller Project

Cancer is the most common recognized condition among survivors. Women make up 47 percent of survivors (and 12 percent of responders) enrolled in the program, according to CDC data, and breast cancer in women is the third-most-prevalent cancer in the program overall. Data is lacking, however, on other female-oriented health problems like uterine cancers and autoimmune diseases, which are more common in women than men. A petition to add uterine and endometrial cancers to the list was rejected in September 2019 for lack of evidence, due to relatively small numbers of women studied. Still, “it was sort of surprising that so many cancers were included, but not uterine,” Reibman says. She supports a new push to get these cancers added, led by New Jersey representative Mikie Sherrill. Inclusion of uterine cancer will be reconsidered at a WTCHP hearing on September 28.

Stephanie Stevens, a spokesperson for the National Institute for Occupational Safety and Health, which houses the WTCHP, said that if the program administrator decides to add uterine cancers to the list, the change would need to go through the federal rule-making process, including a public comment period. It’s a process that typically takes months to complete. And under the Zadroga Act, the WTCHP does not pay for treatment until a condition is on the list, meaning coverage would not be retroactive.

Sara Director, an attorney at the firm Barasch McGarry, which represents more than 25,000 9/11 responders and survivors, supports the effort. “Certainly, a 9/11 survivor or responder who’s suffering from uterine cancer is frustrated that this cancer is excluded from the ones that have been presumed to be caused by the toxins,” says Director, herself a survivor, having attended New York Law School, located a half-mile north of Ground Zero, at the time. “We urge everyone in the community, that when they go to the [WTCHP], even if their cancer is not one that will qualify them, to make sure that the health care program knows about it.”

The reason that my paperwork was denied was [that] there aren’t enough studies, because there weren’t enough women.

Unfortunately, this won’t do much to help women like Emily*, who had a civilian job with the New York Police Department before 9/11. Afterward, she was reassigned to help identify missing people, putting her downtown on the day of the attack and for several months that followed. In fall 2019, Emily, who is postmenopausal, suddenly started bleeding regularly, requiring pads. Soon after, she was diagnosed with endometrial cancer and had surgery, chemotherapy, and radiation to treat it.

Emily is enrolled in the WTCHP as a responder, but at a checkup a few months following her treatment, her doctor told her that the paperwork they’d filed to WTCHP had been rejected, because endometrial cancer wasn’t a recognized 9/11-linked condition, and thus she was ineligible for coverage by the program. Her health insurance doesn’t fully cover her medical expenses, which she says have cost her between $5,000 and $7,000 and counting. She would have paid nothing out of pocket if the condition were recognized. “The reason that my paperwork was denied was [that] there aren’t enough studies, because there weren’t enough women,” she says.

And there’s even less data on women who were children or young adults at the time of the attacks — initial research on 9/11-related health problems reviewed by NIOSH was done on people who were, on average, in their 40s and 50s, Reibman says, leaving yet another knowledge gap for women. “There’s been a deficiency in surveying for a lot of sex-associated issues, and those include issues in terms of reproductive health that we really know little about,” she says.

Nordstrom, now 37, has been diagnosed with asthma, rhinosinusitis, gastroesophageal reflux disease, and PTSD, all WTCHP-covered conditions. While she was able to eventually enroll in the health program, during college she sought care for recurring asthma attacks — and faced skepticism. “I would see doctors who would tell me that there were no health conditions linked to World Trade Center exposure, or that only first responders got sick and so I couldn’t possibly be sick with 9/11-related asthma,” says Nordstrom, the author of Some Kids Left Behind: A Survivor’s Fight for Health Care in the Wake of 9/11. “I was just kind of told that it was in my head or that I should relax.” Nordstrom — who testified to Congress in June 2019 alongside former Daily Show host Jon Stewart and first responders to fight for federal funding for survivors — says that, for those who can get in, the program is a godsend. But in her view, it doesn’t treat women the same as men, especially women survivors. “Part of the narrative that was necessary in order to get federal funding passed was that this was about heroes, but that left out the 300,000 people that had just been downtown doing whatever because they were told it was safe,” Nordstrom says. “When do women ever get access to a hero narrative? Never.”

* Emily asked to be identified by a pseudonym because she and her doctors plan to appeal her case.

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