For many families, cancer is the fight of their lives, but the News4 I-Team found some are having to endure another fight they never expected: getting their treatment covered by insurance.
Critics say the insurance industry is prioritizing money over medicine when it comes to a radiation treatment called proton therapy, which uses a beam of protons to target tumors more precisely than traditional photon radiation, so it's less damaging to the surrounding healthy tissue.
"I think that's something that people need to understand, that there is an alternative form of radiation treatment out there," said Ron Rivera, head coach of the Washington Commanders football team and an enthusiastic advocate for proton therapy.
Rivera credits proton therapy as a big part of saving his life. He underwent a month of treatments at a center in Northern Virginia following his diagnosis with neck cancer in 2020. The carcinoma manifested in a lymph node and the back of his throat.
"It can be targeted at specific areas and it can limit the amount of collateral damage," Rivera told the News4 I-Team. "I was fortunate. We got it early, and it was highly treatable, highly curable at that point."
As a veteran of the National Football League, Rivera is used to tackling problems with well-designed plays and he says this was no different.
"We asked [the doctor], 'If I was your brother, what would you have me do?' He said proton therapy," Rivera said. "So, we made this plan. They submit the plan, and I get notice I was denied."
Investigations by the News4 I-Team
He came to find out that's normal. His doctors, and those at all of the nation's 38 proton therapy centers, have to dedicate time daily to argue with insurance companies.
"I'm thinking, really? I mean, with the insurance I have?" said Rivera. "I think that's terrible. I think that's so unfair. If you pay for insurance, insurance should cover what you need. It should take care of you."
With Washington's football team counting on him to show up every Sunday, Rivera didn't have time to delay his treatment. The team's owner started making calls, too, and three days later, the insurance company reversed its decision.
"It's like a nuclear reactor. I mean, it's expensive to build. That's the unfortunate part. But once it's there, why not use it?" Rivera said.
The treatment is usually administered daily over a period of several weeks. It can cost hundreds of thousands of dollars. Rivera says it may be easier on some patients than traditional photon radiation, but that doesn't mean it's pleasant.
"It's scary. If you're, if you're claustrophobic, there's no way. It's tough," said Rivera. "You lay on the table and they snap you in and then this machine comes over, and it just stops in its different positions and you get your treatment."
McLean, Virginia, resident Denise Durgin credits proton therapy with helping her beat breast cancer in 2018, but her insurance company repeatedly declined to pay, which she calls terrifying for a patient who's already worried about cancer.
"At the end of March, I was prescribed protons, and we were going into May 4 or 5, and I still hadn't started radiation," Durgin said.
She was about to pay out of pocket on three credit cards when her insurance finally came through.
"I'm not very dramatic. It just, I could not believe time didn't matter to insurance, but it did to my physicians," said Durgin.
She says the reversal eventually came when her doctors insisted on a peer-to-peer review with another radiation oncologist at the insurance company.
"Their physicians that are evaluating that are not necessarily trained in oncology or, specifically, radiation oncology," said Jennifer Maggiore, executive director of the National Association for Proton Therapy.
NAPT represents proton centers nationwide and helps advocate for approval of proton therapy treatments for patients.
“Unfortunately, the insurance companies have not caught up with the research," said Maggiore. "Proton therapy has been mislabeled as investigational or experimental."
The FDA approved the treatment in the 1980s, but some doctors say there still isn't enough research to prove it's more effective than photon radiation for some cancers and worth the high cost.
Dr. Anthony Zietman, interim chief of radiation oncology at Massachusetts General Hospital in Boston, believes proton therapy centers expanded throughout the United States too quickly.
"The problem was that the facilities were going in ahead of the evidence to support their use," he said. "When you paid $150, $200, $250 million dollars for a facility, you want to get your money back."
He said the costs of delivering proton therapy are starting to come down as newer treatment machines are smaller and more "turnkey." That may make it easier for insurers to support use of proton therapy down the road.
A spokesperson for America's Health Insurance Plans told the I-Team with health care costs rising, "It's important to focus on treatments that work," and that, "Studies have not shown proton therapy to be more effective than traditional treatments for many types of cancers." AHIP said widespread approvals could mean "higher premiums and health care costs for everyone, without better health outcomes to show for it."
Zietman said for certain tumors near the spine, heart and lungs, or brain, and in pediatric patients, proton therapy may be superior, but that doesn't mean it's right for all cancers or all patients.
"The evidence is coming,” he said. “We're going to have it. But I can understand the payers pushing back until the evidence is actually out there and presented and critically examined."
He added that a prostate cancer trial is now complete and will be reported in 2024. A breast cancer trial also is underway.
In the meantime, Durgin has channeled her frustration with the insurance approval process and published a book to help guide other patients.
"I just really wanted our stories to be told, and these people in the book, they are incredible fighters," she said.
She interviewed a dozen other survivors for the book, including Rivera. All of the adults had initially been denied coverage by private insurance.
"It's opened my eyes to want to be an advocate for those," said Rivera. "And so that's why I'm speaking out, because ... people's health is a little bit more important, I think, than the bottom line."
Rivera said he's even more equipped to speak about the benefits of proton therapy because at one point, the machine wasn't working properly, and he had to use photon radiation instead. He said fans might remember the noticeable difference during a team news conference.
"It affected my, my salivary glands, and they became really hyperactive," he said. "And every time my mouth would fill up, I'd have to, you know, grab the cup, lean over and spit right in the middle of my interviews."
Rivera said his proton therapy may have cost more up front, but he believes it lowered other costs in the end.
"Because I didn't have so much collateral damage ... I was able to power myself through this, where I didn't have to get a feeding tube, where I didn't get hospitalized," Rivera said.
That kept him on the field and able to focus on more wins for the football fans.
Reported by Jodie Fleischer, produced by Rick Yarborough, shot by Steve Jones and Lance Ing, and edited by Lance Ing.
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