For the first time in nine years, the World Trade Center Health Program is adding to its list of health conditions. First responders and survivors of the 9/11 attacks suffering from uterine cancer are likely to soon be eligible for free care and compensation, after a proposed addition is finalized in the coming weeks.

Ten years after the attacks, the federal government established the World Trade Center (WTC) Health Program on a long-term basis through the Zadroga Act. Building on previous research efforts, the program provides free health care to first responders and survivors while studying the ongoing impacts of exposure to the aftermath of the 2001 attack.

But there’s a catch: patients can only receive free care for conditions that the WTC Health Program has formally determined are linked to exposure.

The new addition is a victory for first responders diagnosed with uterine cancer, some of whom have waited years for coverage while undergoing expensive treatments.

“I know I would be getting better care if it was approved,” said Regina Cervantes, an EMT who worked at Ground Zero. She recalls lengthy battles with her health insurance provider over different types of treatments. Thousands of other first responders and September 11 survivors who may be at risk for uterine cancer will now be eligible for free preventative care.

The decision will also mean that all forms of cancer are finally covered by the program. The gender breakdown of first responders made uterine cancer difficult for researchers to identify in connection with the World Trade Center attacks.

Connecting uterine cancer to WTC exposure

In the 20 years since the World Trade Center attacks, researchers and doctors working with first responders have identified a wide range of health conditions that may be linked to their time at the site.

When the towers collapsed, the buildings fractured into pieces of particulate matter, a toxic form of pollution typically created by wildfires and burning fossil fuels. The smoky fallout also carried carcinogens and other dangerous chemicals. Many first responders worked at Ground Zero for months after September 11th, sometimes without appropriate protective equipment to shield against the toxins clinging to the air.

“The smells were bad,” recalled Dr. Tammy Kaminski, a chiropractor who volunteered at Ground Zero for several months. But she didn’t realize the full implications of this exposure before she was diagnosed with uterine cancer in 2015.

Most forms of cancer were included in the coverage list by the early 2010s, said Dr. John Howard, the WTC health program’s administrator. The program has served more than 83,000 first responders and 33,000 survivors. Common cancers have been linked to WTC exposure by researchers for years. Skin cancer, prostate cancer and breast cancer are the types most widely covered by the program. It also added all rare cancers as a blanket policy, assuming that they would not show up among first responders in high enough numbers to study.

Uterine cancer is not considered rare in the broad U.S. population because it impacts more than 15 in every 100,000 people each year, Howard said. Among first responders, however, it’s less common because this group is overwhelmingly male.

It wasn’t until the late 2010s that Dr. Iris Udasin, principal investigator for the WTC health site based at Rutgers University, began to notice the condition among her patients, including Kaminski.

“I have a number of patients that have uterine cancer,” Udasin said. She began wondering, “Why do these patients have a kind of cancer that’s not covered by World Trade, and could it be related to their exposure?”

In September 2020, Udasin co-authored a letter to Howard with doctors from four other WTC health clinics, asking him to add uterine cancer to the list. Typically, requests for new conditions come through a formal petitioning process in which patients write letters to Howard with scientific evidence and arguments about why the conditions should be covered, he said. But he took the doctors’ letter seriously and began investigating.

Investigating the link between WTC exposure and uterine cancer was a years-long process, made complicated by the small number of impacted first responders. Though WTC survivors are also eligible for treatment through the health program, research tends to focus on first responders, such as the firefighters participating in a long-term study.

Providing free health care to first responders

A white paper, other scientific evidence and discussions at WTC advisory committee meetings have now provided sufficient documentation for uterine cancer to join the list. The inclusion is currently in a public comment period, closing this week, on June 24th.

Donna Malkentzos, a retired NYPD detective and first responder who’s had multiple bouts of uterine cancer, left a public comment supporting the move. She hopes to see the research behind this change expanded: “It should come to the forefront that there aren’t enough studies done on women,” she said.

After addressing public comments, Howard said, WTC leadership prepares a final version of the guidance change, which is reviewed again by government agencies.

Then, patients will become eligible for free treatment.

“It feels like a huge relief,” Kaminski said. She feels hopeful for younger WTC first responders and survivors who may develop uterine cancer in the coming years and will be able to receive care with fewer barriers.

Malkentzos expressed pride that the addition is finally happening after years of advocacy. Plus, the WTC program “can start picking up the tab for my medication,” she said.

Along with health care, first responders and survivors with uterine cancer will become eligible for payments through the September 11th Victim Compensation Fund. There are still some logistical hurdles, though: For example, Cervantes now lives in California, far from the WTC clinics that cater to first responders. She often has to communicate with the program by mail.

First responders and survivors can also receive free annual check-ups and preventative screenings with the WTC Health Program. Udasin encouraged patients to take advantage of these screenings, which can help identify conditions like uterine cancer before they progress to late stages.

Data from check-ups, along with petitions from patients, provide the health program with avenues for continued research into new conditions that may be linked to WTC exposure.

“We look at all the literature, even if we turn down a petition because of insufficient evidence,” Howard said. Current areas of investigation include neuropathy for nerve damage and autoimmune conditions.