Before The Fuller Project’s reporting, the federal health program for 9/11 first responders and survivors covered every single cancer except for uterine cancer.
But after a decade of lobbying and waiting, 9/11 first responders and survivors with uterine cancer can finally get the federal health coverage they’ve long been promised. In mid-January, 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 directly impacted by 9/11.
Hundreds of program enrollees who survived Ground Zero but received no help from the government for their uterine cancer will now get that coverage — like Donna Malkentzos, Patricia Grande and Tammy Kaminski — and thousands more who were never able to enroll now qualify for the program.
“We’re relieved and feel like we can finally exhale, knowing many women will now receive the benefits they deserve,” said 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 comes 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 research samples and excluded conditions that affect women.
The program uses its own data to aggregate 9/11 causation and subsequent treatment, so uterine cancer and other female-specific conditions like auto-immune disorders were left off the list because patients in the WTCHP (mostly male) 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 with Reckon and NJ.com in early January, Rep. Frank Pallone (D-N.J.) sent a letter to HHS Secretary Xavier Becerra and WTCHP Administrator John Howard urging them to act. Pallone sits on the House Energy and Commerce Committee with jurisdiction over HHS, 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 three 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 WTCHP 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. Now these women can feel vindicated and can access free healthcare that is statistically more likely to extend their lives,” says Matthew Baione, a lawyer who has been one of the earliest advocates for the cancer’s inclusion.
