“The insurer who denied proton therapy thinking it would save money will have to pay for the increased cost of the member’s overall cancer care. For employer self-funded health plans, these insurers are unnecessarily passing that expense on to them, in addition to the added expense of having a valued employee out of work for a longer period of time,” said Rich Collins, a partner at Arnall Golden Gregory with 25 years in healthcare litigation.

In another three-year study published in 2020 in JCO Oncology Practice, MD Anderson Cancer Research Center found during one- to six-month follow-ups that total average charges for overall ancillary care use (internal medicine, pharmacy, laboratory, emergency room visits, and diagnostic imaging) was 4.7% lower for patients who underwent proton therapy versus photon radiotherapy. It also found that objective evidence-based treatment guidelines did not lead to overuse, ensured appropriate patient selection, and reduced administrative burdens for all parties.

The problem, according to Chang, is that side effects may not occur until five to ten years after treatment, dissuading insurers from considering the cost of care for them in their initial evaluation. Depending on where the cancer is, these side effects may include damage to nearby organs from radiotherapy such as the kidneys, strictures in the valves, scarring in the throat, and even the development of secondary cancers.

By then, many patients have often retired and enrolled in Medicare, placing the burden of the cost of addressing the unnecessary side effects on the shoulders of taxpayers.

“Coding systems don’t account for those things, only looking at individual treatments to determine if they will approve a treatment for a specific case,” said Chang.

In need of more objective guidelines
Insurers often classify proton therapy as experimental and investigational even for enrollment in clinical studies, limiting the number of recruits needed for thorough assessments.

“This slows down research and can lead to disparities in research recruitment and access to advanced treatments,” said Bill Thomas, associate vice president of the office of governmental relations at Hampton University, the only Historical Black College and University with its own proton therapy center, the Proton Therapy Institute.

A 2022 study published in JAMA showed that Black patients were less likely to receive proton therapy than White patients, especially for cancers that proton therapy is recommended for over photon-based radiation, including tumors with complex anatomies, surrounding by sensitive tissues, or in children, for which proton therapy is universally covered. Even when the number of proton therapy facilities rose, racial disparities increased, indicating that the problem lies with health insurance policies that do not account for the specific risks that people of color face and discriminatory factors that limit their access to care.

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