For many families, cancer is the battle of their lives, but News4’s I-Team has found that some are facing another battle they never expected: having their treatment covered by insurance.
Critics say the insurance industry prioritizes 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 is less damaging to surrounding healthy tissue.
“I think it’s something people need to understand, that there is an alternative form of radiation therapy,” said Ron Rivera, head coach of the Washington Commanders football team and a strong proton therapy advocate.
Rivera credits proton therapy with being a big part of saving his life. He underwent a month of treatments at a center in Northern Virginia after he was diagnosed with neck cancer in 2020. The carcinoma showed up in a lymph node and in the back of his throat.
“It can be targeted to specific areas and it can limit the amount of collateral damage,” Rivera told News4 I-Team. “I was lucky. We got it early, and it was highly treatable, highly curable at that time.”
As a National Football League veteran, Rivera is used to solving 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 a notice that I was denied.”
He came to find out that was normal. Its doctors, and those of the 38 proton therapy centers in the country, must devote time daily to talking with insurance companies.
“I’m thinking, really? I mean, with the assurance that I have?” said Rivera. “I think it’s terrible. I think it’s so unfair. If you pay for insurance, insurance should cover what you need. It should take care of you.”
With the Washington football team relying on him to show up every Sunday, Rivera didn’t have time to delay treatment. The team owner also started making calls and three days later the insurance company reversed their 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?” said Rivera.
Treatment is usually given daily over a period of several weeks. It can cost hundreds of thousands of dollars. Rivera says it may be easier for 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 hard,” Rivera said. “You lay down on the table and they snap you in, and then this machine comes in, and it stops in its different positions and you get your treatment.”
McLean, Va. resident Denise Durgin credits proton therapy with helping beat breast cancer in 2018, but her insurance company repeatedly refused to pay, which she calls a patient terrifying who is already worried about cancer.
“At the end of March, I was prescribed protons, and we were going to May 4 or 5, and I still hadn’t started radiation therapy,” Durgin said.
She was about to pay three credit cards out of pocket when her insurance finally kicked in.
“I’m not very dramatic. I just couldn’t believe time didn’t matter to insurance, but it did to my doctors,” Durgin said.
She says the reversal finally happened when her doctors insisted on a peer review with another radiation oncologist from the insurance company.
“Their physicians who are evaluating who are not necessarily trained in oncology or, more specifically, radiation oncology,” said Jennifer Maggiore, executive director of the National Proton Therapy Association.
NAPT represents proton centers nationwide and helps advocate for the approval of proton therapy treatments for patients.
“Unfortunately, insurance companies haven’t followed the research,” Maggiore said. “Proton therapy has been mislabeled as investigation or experimentation.”
The FDA approved the treatment in the 1980s, but some doctors say there’s still not enough research to prove it’s more effective than photon radiation for some cancers and worth the high cost .
Dr. Anthony Zietman, acting chief of radiation oncology at Massachusetts General Hospital in Boston, believes that proton therapy centers have expanded too quickly in the United States.
“The problem was that the facilities preceded the evidence to support their use,” he said. “When you’ve paid $150, $200, or $250 million for an installation, you want your money back.”
He said proton therapy costs are starting to come down because newer treatment machines are smaller and more “turnkey”. This may make it easier for insurers to support the use of proton therapy in the future.
A spokesperson for U.S. health insurance plans told I-Team that health care costs were rising: “It’s important to focus on treatments that work” and that “Studies have not shown that proton therapy was more effective than traditional treatments for many types of cancers.” AHIP said widespread approvals could mean “higher health care premiums and costs for everyone, without better health outcomes.”
Zietman said that for some 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 or all cancers. the patients.
“The evidence is coming in,” he said. “We’re going to have them. But I can understand the payers backing off until the evidence is actually available, presented and critically reviewed.”
He added that a prostate cancer trial is now complete and will be reported in 2024. A breast cancer trial is also underway.
In the meantime, Durgin has channeled his frustration with the insurance approval process and published a book to help guide other patients.
“I really wanted our stories to be told, and those people in the book, they’re amazing fighters,” she said.
She interviewed a dozen other survivors for the book, including Rivera. All adults were initially denied coverage by private insurance.
“It opened my eyes to want to be an advocate for those,” Rivera said. “And 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 was even better equipped to talk about the benefits of proton therapy because at one point the machine malfunctioned and he had to use photon radiation instead. He said fans might remember the noticeable difference at a team press conference.
“It affected my, my salivary glands, and they got really overactive,” he said. “And every time my mouth filled, I had to, you know, grab the cup, bend over, and spit right in the middle of my interviews.”
Rivera said his proton therapy may have cost more initially, but he thinks it ultimately reduced other costs.
“Because I didn’t have as much collateral damage…I was able to get away with it, where I didn’t need a feeding tube, where I didn’t have to be hospitalized,” Rivera said. .
It kept him on the pitch and able to focus on more wins for football fans.
Reported by Jodie Fleischer, produced by Rick Yarborough, shot by Steve Jones and Lance Ing, and edited by Lance Ing.