Alexa had recently moved to East Tennessee with her husband, Peter, and their one-year-old daughter. Peter had accepted a job as an Assistant Coach for the University of Tennessee Chattanooga Men’s Basketball team. She was settling into her new life and going about a normal day when she discovered something strange while brushing her teeth – a painful growth in the back of her throat. Visions of the worst-case scenario raced through her mind and were soon confirmed. It was cancer – oropharynx squamous cell carcinoma to be specific.
Alexa quickly began the confusing, overwhelming educational journey familiar to most cancer patients. Her journey led her to multiple clinical opinions and a number of potential treatments. One of the early favorites was radiation therapy, where x-ray beams would be directed through her body to destroy the tumor. However, this came with some pretty scary side effects. Alexa learned that patients with her type of cancer who are treated with traditional radiation therapy typically suffer from a painful condition called mucositis. This is caused by the excess radiation dose delivered outside of the tumor. Mucositis often leads to an inability to eat and significant weight loss. In some cases, patients require a feeding tube because they can no longer swallow. In more severe cases, patients never regain the ability to swallow. Most certainly, Alexa would not be able to care for her daughter with these types of side effects.
Fortunately, Alexa’s journey did not end there. She discovered that she was a candidate for proton therapy. Protons have unique physical properties that allow a radiation oncologist to deliver radiation to a patient’s tumor while avoiding unnecessary radiation to healthy tissue. This lowers the risk of many of the painful side effects from traditional radiation that had Alexa so concerned. Her mind was easily made up. She would come to Provision and get treated with protons for approximately seven weeks.
It was then she realized there was another big hurdle to overcome before she could start treatment. She had to obtain approval from her insurance company to cover the cost of proton therapy. She expected this to be a given considering the significant benefits proton therapy offered, especially when both her insurance company and the proton therapy center were non-profit East Tennessee companies committed to the public good – her good.
Despite her physician’s adamant support, her insurance provider denied the request for proton therapy coverage. They called the treatment “experimental” even though it has been FDA approved since 1988, and has been used to treat cancer since 1954. Alexa appealed and followed the multi-step process her health plan required. This included a peer review by a physician retained by the insurance company with no background in oncology, let alone the specialty of radiation oncology.
The appeal process lasted almost 90 days. The growth protruded inside her throat making swallowing difficult and was a daily reminder of her predicament. Her insurance company denied all of Alexa’s additional requests. Effectively denying decades of research, they claimed that the benefits of less radiation have not been proven through randomized control trials. Even though Medicare has covered proton therapy for more than twenty years and the National Comprehensive Cancer Network guidelines have expressed support for proton therapy in the treatment of head and neck cancer, her insurer simply said, “No.”
Alexa was at a loss. Her family had paid their insurance premiums for years and now, when she finally needed the insurance company to fulfill its side of the bargain, it felt as if they abandoned her. If she were old enough to receive Medicare, she would be covered. Fortunately, Alexa’s family worked out an arrangement with Provision CARES Proton Therapy to obtain treatment. To help ensure that future cancer patients like Alexa have coverage when they need it most, the non-profit patient advocacy group Tennessee Cancer Patient Coalition is encouraging cancer patients and caregivers to contact their representatives in support of passing legislation to provide this needed coverage for cancer patients.
Since Alexa’s journey, there have been many advances in insurance coverage for proton therapy. As of April 2021, proton therapy is covered by most major carriers. It’s important to note that coverage varies on many factors, including cancer type, stage, and specific benefits. As coverage of proton therapy continues to expand with major insurance carriers, the best way to determine your coverage is to contact our Cancer Care Experts at 1-833-6-PROTON and ask them for insurance assistance from our Financial Services Team.