Local Cancer Survivor, Alliance Seek Insurance Process Reform

WEST LAFAYETTE, IN — A West Lafayette woman whose cancer is in remission thanks to a team of medical experts and treatment is working to fight another kind of battle she describes as "maddening."

Linda Thomas, 57, was diagnosed in 2017 with a rare head and neck cancer, which called for proton therapy treatment. Thomas said although going through six weeks the treatment wasn't difficult, appealing her insurance company's denial to cover it was anything but.

Now an advocate for insurance appeal process reform, Thomas is joining *the Alliance for Proton Therapy Access in their mission to call on officials to fix the broken insurance process. As Thomas isn't the only one going through the frustrating process of appealing an insurance company's decision to deny treatment coverage, the Alliance for Proton Therapy Access released a national report on May 17 titled Cancer Care Denied: The Broken State of Patient Access to Proton Therapy. This report reveals the "heavy emotional and financial burden many cancer patients endure trying to get their insurer’s approval for physician-recommended proton radiation therapy."

In an alliance release sent to Patch, Proton therapy is described as "an FDA-cleared treatment, often approved for pediatric and Medicare patients, that allows physicians to precisely control and conform the bulk of its cancer-fighting proton energy field on cancerous cells, thereby minimizing extraneous radiation dose to healthy tissues, preserving organ function, and potentially reducing harmful side effects."

Patient data reported in the release from several proton therapy centers shows that Thomas is just one of the 63 percent of cancer patients between the ages of 18 and 64 initially denied by their insurer, even though their physicians recommend the therapy as the best course of treatment for their disease.

Thomas shared the moment this all started last year, when she was putting earrings in and grazed over a little bump behind her ear. Although Thomas says the small bump was painless and almost overlooked, she had it removed by an ear, nose and throat doctor who sent it to a lab for testing.

Thomas said she was shocked when she found out the small bump was cancer.

However, she quickly got to work researching the best cancer centers for her disease, which led Thomas to MD Anderson Proton Therapy Center in Houston, Texas.

"I went to MD Anderson for an evaluation because of its world renowned expertise," Thomas said. "The treatment plan there recommended proton radiation."

As proton therapy isn't available in Indiana, this meant the mother of three would be spending her time down south for treatment.

“We caught the cancer very early as it was contained and I had surgery to remove the tissue," Thomas said. "Then the radiation, where in my case they radiated to get any cells that may be remaining due to my particular, very rare type of cancer. My cancer was also sitting on a nerve, which means it's more likely to metastasize."

Thomas described the proton therapy process as treatment that includes wearing a mask with a guard that goes over the shoulders and locked into place. She said this prevents movement for what can take up to 40 minutes depending on the number of patients and radiation beam angles.

The length of treatment, post-treatment radiation burn and other side effects are what Thomas calls small prices to pay when it came to surviving and what she went through with her insurance company.

Thomas said Anthem gave her nothing but a generic statement when they notified her, telling her they were reviewing her claim. She said Anthem eventually denied coverage by providing another standard response.

"It was the same kind of templated language you see in many denials," Thomas said. “They say the treatment is investigational, or experimental, and the other reason they give is it’s not medically necessary, as there are other treatments.”

Nearly $56,000 dollars from family members is what Thomas said her treatment cost. Thomas said the next issue step in her insurance denial process came when she received an inaccurate denial letter identifying her request for treatment as a claim for an MRI of the L-Spine; wrong treatment and wrong part of the body. The insurer also consistently ignored federal regulation for an expedited appeal request, which mandates a 72-hour response. There was no penalty for the insurer’s violation.

"Our family plan is self-funded by my husband's employer, so they contract with Anthem to administer it" Thomas said. "Self-funded insurance plans fall under federal regulation and have a bit less protection. The others fall under state."

Thomas advises anyone going through this to read their insurance company's health plan and seek external review, as that's how she was eventually able to get approved following the stressful appeal process. She adds that the fact there's the same denial process across the board shows a huge need for insurance reform and repeal reform.

"It’s a complicated process as the language in the health plans is very daunting for many patients,” Thomas said. "Some patients I met in Houston had no idea you could appeal. It’s so daunting, on top of dealing with a cancer diagnosis."

Thomas said she takes time to help explain the appeal process to patients, which she described as documents that require a lot of completion time by both the insurance company and medical providers.

While the insurance payment finally came through and MD anderson refunded all the money in the end, Thomas said it was a gamble.

"If it wasn't approved, all that money and more would've been spent," Thomas said. “But you have the brilliance of six, seven, eight of the world’s top cancer doctors in Houston, so that's one of the reasons I feel justified in having been irritated by the insurance denial."

According to a release from the alliance, proton therapy is denied more than four times out of ten (42 percent) and it takes an average of more than five weeks (27 working days) to receive that final denial.

“When dealing with the enormity of a cancer diagnosis, private health insurers are adding undue physical, emotional and financial stress on patients. They are denying payment, dragging patients, their families and their doctors through lengthy appeals processes, and delaying access to treatment—seemingly in a systematic and intentional manner,” said Daniel E. Smith, Executive Director of the Alliance, in a release sent to Patch.

That's why the alliance says they've launched Cancer Care Denied, the same name as their report, which is a grassroots campaign calling on insurance commissioners in all 50 states to adopt and enforce principles of a Cancer Patients’ Timely Treatment Bill of Rights and hold insurers accountable for providing fair, timely, and transparent access to cancer treatment, calling for: Fair, timely, appropriate access to doctor-recommended cancer treatment; Enforcement mechanisms executed by insurance commissioners, including automatic approvals if insurers fail to meet timelines and meaningful fines for repeated failure to provide fair, appropriate approvals; and the same rights for cancer patients covered by employer self-funded plans.

“The totality of this experience has shown me just how sick the health insurance industry has become," Thomas said. "It is inexcusable that health insurers can act in bad faith with no repercussions, while critically ill and compromised patients are expected to wage battle and navigate the deliberately confusing bureaucratic appeals process for the care that is rightly theirs."

Thomas adds that while she was able to take a huge financial risk to protect her health, not all patients are able to do the same. "What will become of them?” asked Thomas.

As the alliance continues their work, Thomas said she hopes to continue remission, work with a law professor who specializes in insurance reform, possibly get a chance to speak at the Indiana legislature, and help encourage and educate others on the appeals process.

“It's a gift to be able to use my communications background to get involved and try and spread the word," Thomas said. "To not only help patients like me walk through the appeals process, but to really empower those who feel like they can’t fight against a denial.”

“By adopting and enforcing these principles, state insurance commissioners can take an important step toward repairing the broken system cancer patients face when they and their doctors are fighting for the best chance at survival and the highest quality of life,” Smith said. “Cancer patients should be fighting cancer, not their insurance companies.”

* The Alliance for Proton Therapy Access is an advocacy organization comprised of a growing community of patients, families, caregivers, physicians, and industry partners working together to make sure all cancer patients seeking proton therapy receive fair and timely payment decisions from their health insurers. The Alliance is governed by a Board of Directors made up of patients, physicians and industry partners. Sign up to be an advocate and learn more about the Alliance at allianceforprotontherapy.org. Follow the Alliance on Facebook and Twitter.

Photo credit: First image of Linda Thomas - Mark Simons; second image of Linda Thomas (left) and her daughter, Carrick Terhune (Right)