According to Dr. Eric Brooks, chief health value officer for the department of radiation oncology at the University of Florida Health Proton Therapy Institute, while many insurers act in good faith, an increasing number have been revealed in recent court cases to be using alternative approval policies or deploying "shadow" methods not specified in their contracts with patients to make coverage decisions. In addition, many payers now outsource their prior authorization reviews altogether to third-party vendors or administrators who may in fact apply different approval policies of their own. This misleads patients, who anticipate benefits based on the contract plan and criteria or methods for those decisions with their insurer, not third parties.

While initial denials, which are most common among young working adults, can be appealed, the process is often long, which risks the cancer spreading and progressing.

“Each week of delay in treatment start — due perhaps to long wait times for PA decisions — can lead to a 1.2% to 3.2% increase in cancer death, a non-negligible risk that could nullify the survival benefit of treatments like protons that are eventually approved,” said Brooks. “Recent research shows that simple PA submission can delay treatment start time by an average of three weeks, but those requiring an appeal can take up to four months. This has effects on our patients.”

Likewise, taking payors to court can take years, with even prelitigation appeals taking too long. As a result, many patients will opt to pay for the treatment out-of-pocket or undergo radiotherapy at the insurer’s expense and risk the potential side effects.

“The real issue is how do we develop a uniform set of standards and guidelines for proton therapy coverage,” said Collins. “Each insurer drafts its own guidelines, its own exclusions, its own definition of ‘medical necessity,’ typically only revising them when ordered by a court to do so.”

Addressing the problem together
Unlike Medicare, which covers proton therapy for a broad array of cancer patients, insurers are private companies that can determine coverage as each sees fit. Ensuring that they determine coverage quickly with fair and contractually appropriate reviews based on an agreed upon consensus of what is medically necessary can only be achieved through legislation that holds such reviews accountable and establishes penalties for when health insurance companies act in a way that is opposite of this consensus or fail to give patients a timely response to prevent harmful delays, says Brooks.

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