By the Fuller Project
For the last decade, every survivor and first responder of the Sept. 11, 2001 terrorist attacks in New York City who later developed cancer has been eligible to receive health benefits from the U.S. government. Everyone except women with uterine cancer.
But following The Fuller Project’s reporting, U.S. Health and Human Services (HHS) officials added uterine cancer to the list of conditions covered by the government program that monitors and treats those who lived and worked in Ground Zero — the 1.5-square-mile portion of New York City where carcinogenic dust and debris lingered for months after hijacked planes took down the World Trade Center twin towers in 2001.
By the beginning of 2024 more than 318 uterine cancer patients had received access to cancer treatment, monitoring and victim compensation funds.
“We’re relieved and feel like we can finally exhale, knowing many women will now receive the benefits they deserve,” said Tammy Kaminski, a chiropractor based in West Caldwell, N.J. who volunteered for months at Ground Zero and later developed uterine cancer in 2015.
The decision to add uterine cancer to the list came after multiple stories from The Fuller Project and its partners about how women were systemically left out of the government’s World Trade Center Health Program (WTCHP).
The reason cited for uterine cancer exclusion was “insufficient evidence” that it was linked to 9/11. But stories run by The Fuller Project and its partners — Reckon, The Star-Ledger/NJ.com and The Cut — revealed the lack of data was due to the small number of women included in the early days of the program, which resulted in skewed data that ultimately excluded conditions that affect women.
The program uses its own data to aggregate 9/11 causation and subsequent treatment coverage, so uterine cancer and other female-specific conditions like auto-immune disorders were left off the list because patients in the mostly male program never developed those conditions — a catch-22 with women as the collateral damage. There was no data to prove causation for women’s conditions because it wasn’t collected — part of a systemic problem in health research.
Following our collaborative reporting U.S. congressman Frank Pallone (D-N.J.) sent a letter to HHS Secretary Xavier Becerra and health program administrator John Howard urging them to act. Pallone sits on the House Energy and Commerce Committee with jurisdiction over federal health policy, and also serves a district where many 9/11 survivors and first responders live.
Just over a week after Pallone’s letter, HHS released a final rule that uterine cancer patients could immediately apply for the program, noting that a “delayed effective date would defer the agency’s ability to provide life-saving treatment and result in less favorable treatment outcomes and survival rates for covered individuals.”
This story and subsequent outcome resulted from dogged follow-up and innovative newsroom collaboration. Over the last four years, reporter Erica Hensley and The Fuller Project exposed the initial exclusion, followed the policy process to add uterine cancer, and ultimately, the delay, when after more than six months officials hadn’t followed through on their promises to add women with uterine cancer to the coverage rolls. It was our final story about the delay in January 2023, which landed in front of Pallone and his constituents, that finally prompted federal action.
Advocates for uterine cancer awareness say the news is an opportunity to spread the information about 9/11 health program enrollment, but also uterine cancer in general, which is often misdiagnosed or diagnosed late and leads to worse outcomes.
“They were told the air was safe to breathe. They were told their cancer wasn’t caused by 9/11,” said Matthew Baione, a lawyer who has been one of the earliest advocates for the cancer’s inclusion. “Now these women can feel vindicated and can access free healthcare that is statistically more likely to extend their lives.”
