For Karen Biss, 61, September 11, 2001 felt like yesterday.
At the time, Biss was working as an executive 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 desk 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.
Biss, 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 any of the two cancers. She attributes her uterine cancer to 9/11, recalling working near the flames, inhaling toxins in what she says 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 had been breathing in for weeks and months.”
Courtesy of Karen Biss
The World Trade Center Health Program recognizes dozens of 9/11-related conditions and helps monitor and treat them. Today, 21 years later, uterine cancer remains the only cancer that has not been recognized as one of them.
Many 9/11-related illnesses, such as lung cancer, match those suffered by first responders, who are mostly men, says Sara Director, a partner at Barasch & McGarry which represents thousands of 9/11 survivors, many of them dealt with uterine cancer.
Uterus cancer, however, is the fourth most common cancer in women in the United States, and it disproportionately affects black women. But research into how many first responders and 9/11 workers near Ground Zero were diagnosed with uterine cancer is unclear, making it increasingly difficult to categorize the cancer as a disease. of September 11.
When a specific cancer or disease is on the list, people without insurance can get free treatment and get resources for medical help.
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 WTC Health Program’s proposed regulations recommend that all types of uterine cancer, including endometrial cancer, be added to the Listing. Adding uterine cancer to the list would allow the WTC Health Program to offer treatment services to members whose uterine cancers are certified as WTC-related.
Lawyers eagerly await approval. In August, Representatives Mikie Sherrill of New Jersey and Carolyn Maloney of New York writing an urgent letter asking for a “quick decision”.
“The hoped-for inclusion of uterine cancer in the list of 68 covered cancers is long overdue,” says the director. “I don’t see what could be more persuasive than giving health care to women in the 9/11 community who have been denied that right for the past two decades.”
Roughly 500,000 people— including first responders, general workers and residents — breathed in toxins for months after 9/11, according to the CDC. People were exposed to what the medical community now understands as endocrine-disrupting chemicals, like benzene, which can lead to hormone-related cancers, like uterine cancer, the director says.
“Adding uterine cancer would be a major victory for women’s rights,” she says, noting that the clients she works with are not only sick but in “financial ruin” because of their healthcare costs. .
“We don’t want anyone to think about paperwork, or ‘did I submit the right application on this website?’ “says the director. “We want them to take care of their health, take care of their families, do their jobs, live their lives.”
Once uterine cancer is added, victims enroll in the WTC health program, provide the information that they were present in the exposure area for a given period of time, and confirm that they are living with a related disease to September 11. Once approved, they can get free or secondary health care.
“We know that members of the WTC health program continue to face health issues that stem from their exposures on or in the months following 9/11,” said John Howard, MD, health program administrator. of the WTC and director of the National Institute for Occupational Safety. and Health, in a statement.
The director shines a light on the larger, often overlooked community of workers affected by toxins.
“This program was put in place to help provide and protect everyone…those who kept New York running when we were told the air was safe, to get back to lower Manhattan and continue our lives”, explains the director. “For the reopening of schools, for the reopening of the stock market, for the return of office workers, where would New York and really our country be today?”
Biss is now in remission from her two cancers and feels grateful to be living her life alongside her three children. She hopes that with the inclusion of uterine cancer in the WTC’s health program, more women who feel left behind will be able to get the care they need.