For 61-year-old Karen Biss, September 11, 2001 feels like yesterday.
At the time, Biss was working as a leader at a software company a few blocks from the Twin Towers. She had stopped on her way to work to pick up a bouquet of flowers for her office when she saw debris falling from the sky. After that day, she wanted to get involved and find a way to help, so she briefly volunteered at Ground Zero with the Red Cross. She also continued to commute by ferry from her home in New Jersey to her office downtown until she quit her job in November.
Bice, now a mother of three and grandmother of four, was diagnosed with uterine cancer in 2008 and breast cancer in 2020. Tests showed she was not genetically predisposed to either type of cancer. She attributes her uterine cancer to 9/11, recalling the time she worked next to the flames, inhaling toxins in what she said looked like a war zone.
“We weren’t told to wear any kind of mask,” Biss says. “Who knows what else was in that building we breathed for weeks and months.”
Courtesy of Karen Biss
The World Trade Center Health Program recognizes dozens of 9/11-related conditions and supports their monitoring and treatment. Now, 21 years later, uterine cancer remains the only cancer not recognized as one of them.
Many of the illnesses associated with 9/11, such as lung cancer, are consistent with those faced by first responders, who are mostly men, says Sarah Director, a partner at Barasch & McGarry, which represents thousands of 9/11 survivors. , many of whom have dealt with uterine cancer.
However, uterine cancer is the fourth most common cancer in women in the US and disproportionately affects black women. But research on how many 9/11 first responders and workers near Ground Zero were diagnosed with uterine cancer is unclear, making it increasingly difficult to categorize this cancer as a 9/11 disease.
When a specific cancer or disease is listed, people without insurance can qualify for free treatment and receive medical assistance resources.
The Federal Register published the proposed rule to include uterine cancer on the list of 9/11 diseases on May 10 of this year.
“The proposed rule from the WTC Health Program recommends that all types of uterine cancer, including endometrial cancer, be added to the list. The addition of uterine cancer to the list will allow the WTC Health Program to offer treatment services to members whose uterine cancer is certified as WTC-related.
Advocates are waiting with baited breath for approval. In August, Reps. Mickey Sherrill of New Jersey and Carolyn Maloney of New York wrote an urgent letter demanding a “quick decision.”
“The expected encouraging inclusion of uterine cancer in the list of 68 covered cancers is long overdue,” says the director. “I can’t think of anything more compelling than providing health care to women in the 9/11 community who have been denied that right for the past two decades.”
An estimated 500,000 people — including first responders, general workers and residents — inhaled toxins in the months after 9/11, according to the CDC. People have been exposed to what the medical community now understands are endocrine-disrupting chemicals, such as benzene, that can lead to hormone-related cancers, such as uterine cancer, the director says.
“Adding uterine cancer would be a big victory for women’s rights,” she says, noting that the clients she works with are not only sick but also in “financial ruin” due to covering their health care costs.
“We don’t want anyone thinking about paperwork or ‘did I apply on this website correctly?'” says the director. “We want them to take care of their health, take care of their family, do their job, live their life.”
After uterine cancer is added, victims enroll in the WTC health program, provide information that they were present in the exposure area for a given period of time, and confirm that they are living with a 9/11-related illness. Once approved, they can receive free or secondary health care.
“We know that members of the WTC Health Program continue to face health challenges resulting from their exposures on or in the months following 9/11,” said John Howard, MD, administrator of the WTC Health Program and director of the National Institute of Occupational Safety and Health, in a statement.
The director highlights the wider, often overlooked community of workers affected by the toxins.
“This program was created to help secure and protect everyone … those who kept New York running when we were told the air was safe to go back to lower Manhattan and get on with our lives.” , says the director. “With schools reopening, with the stock market reopening, with office workers returning, where would New York and indeed our country be today?”
Biss is now in remission with both her cancers and feels grateful to be living her life with her three children. She hopes that by including uterine cancer in WTC’s health program, more women who have felt left out can get the care they need.