The Mayo Clinic is exiting a federal program that covers medical care for people sickened from the Sept. 11, 2001, terror attacks, according to two patients and an organization that advocates for 9/11 responders and survivors.
The cancer patients had been getting treatment at the Mayo Clinic in Phoenix and Scottsdale, Arizona, for years through the World Trade Center Health Program, which pays providers to treat people who contracted cancer, respiratory illnesses, injuries and other ailments during or in the aftermath of the 9/11 attacks in New York, Virginia and Pennsylvania.
The patients received notices from Managed Care Advisors, a division of benefits administrator Sedgwick that manages the program’s National Provider Network, this month that the Mayo Clinic was withdrawing, they said. The World Trade Center Health Program covers about 137,000 people, including more than 34,000 outside the New York metropolitan area.
“It’s not something that is a very comfortable situation,” said John Schulte, a former U.S. Forest Service official who went to New York the evening of Sept. 11 and remained for 68 days helping coordinate the federal response to the attack.
“When you’ve got a cancer that there’s no cure for, you have to get treatment. And you’re told, ‘Well, they’re [Mayo’s] not covered, they’re not in network,’ and you can’t just start over anywhere building a medical team to deal with you,” said Schulte, who lives in Albuquerque, New Mexico, and had an appointment scheduled at the Mayo Clinic in Scottsdale on April 14.
Schulte has four conditions, including rare cancers, that are covered under the World Trade Center Health Program. He only found out his pending visit wouldn’t be covered when he sought approval for travel expenses for his 500-mile journey and hotel accommodations, he said.
Similarly, another Arizona patient who asked that his name be withheld out of privacy concerns, said he only discovered a little over a week ago that his April 21 appointment would not be covered.
“I have no idea what I’m going to do,” said the patient, who recounted fleeing down 40 flights of the burning north tower of the World Trade Center on Sept. 11, and now suffers from three types of cancer covered under the 9/11 program. “I need to be followed up every three months. This is not a checkup. I need continuous care because the cancer is getting the better of me.”
A Mayo Clinic spokesperson declined to provide an explanation for why the Rochester, Minnesota-based nonprofit health system decided to leave the World Trade Center Health Program National Provider Network.
The Centers for Disease Control and Prevention and its National Institute for Occupational Safety and Health, which oversees the 9/11 health program, are looking into it, according to a spokesperson. “The WTC Health Program is in active discussions with the Mayo Clinic about this issue,” the spokesperson said in a statement.
The advocacy group 9/11 Health Watch wrote to Mayo Clinic CEO Dr. Gianrico Farrugia, urging the provider to reconsider and raising the possibility that other 9/11 responders and survivors are being shut out.
“We are deeply concerned that the Mayo Clinic’s refusal to participate in the World Trade Center Health Program and provide cancer care will cause great hardship and harm to 9/11 responders and survivors in the program,” 9/11 Health Watch Executive Director Benjamin Chevat wrote to Farrugia last Wednesday.
“We believe that there may be many more than the two cases we have identified, but because of the Trump administration’s ‘communication pause,’ we cannot determine if there are more cases in Arizona or in your locations in Florida or Minnesota,” Chevat wrote. The Health and Human Services Department suspended most external communications on Jan. 21, the day after President Donald Trump’s second term began.
One of the justifications for the program and its reliance on advanced cancer centers is that many 9/11-related conditions are rare and go undiagnosed or are inadequately treated in less comprehensive settings.
The Arizona patient said he was first diagnosed with cancer in 2014 and has been getting care at the Mayo Clinic through the 9/11 health program since 2016. Schulte said he started getting sick in 2009, but wasn’t accurately diagnosed until visiting the Mayo Clinic in 2016. He got coverage through the World Trade Center Health Program in 2018 after learning his rare conditions qualified him for benefits.
This is not the first time 9/11 patients have run into difficulties at a major cancer center. Last year, patients at the University of Texas MD Anderson Cancer Center in Houston were nearly cut off in a disagreement over reimbursement rates, but the nonprofit health system decided to remain in the network.
To Schulte, this episode represents yet another broken promise in a string dating back 24 years. Among his responsibilities at ground zero was procuring safety equipment for responders, but federal officials falsely asserted the air was safe to breathe and only allowed him to purchase paper masks, he said.
And now, the promise that the nation would take care of people like him also appears unkept, leaving him in a lurch, Schulte said.
“The patient shouldn’t go through ‘Well, they’re not network anymore. You can’t go there.’ That’s pretty hard to handle when you’re sick, needing something done,” Schulte said. “It doesn’t cut it. That’s not an answer you give somebody who’s dealing with something that’s going to kill them.”
