New Alliance of Cancer Care Advocates Launches National Campaign to Promote Fair and Timely Access to Proton Therapy

“Tell Insurers: Fight Cancer, Not Me” campaign issues letters to insurers seeking clarity on current proton therapy coverage policies and approval processes

By Alliance for Proton Therapy Access | July 25, 2017

WASHINGTON – The Alliance for Proton Therapy Access (the Alliance) today launched a national campaign, Tell Insurers: Fight Cancer, Not Me, to advocate for fair, fast and transparent insurance payment decision policies for cancer patients in need of proton therapy – a form of radiation therapy that precisely targets cancerous cells with minimal damage to healthy tissues. Despite being a scientifically proven, FDA-cleared treatment, patients too often must resort to other treatments – or pay the full cost of proton therapy – because their health insurers deny treatment or draws out an appeals process that is too long for patients fighting cancer, and their physicians, to endure.

Proton therapy is a precise form of radiation therapy treatment that targets cancer cells without exposing the surrounding healthy tissue and organs to excessive radiation, thereby reducing harmful side-effects and other health risks. It is recognized in the National Comprehensive Cancer Network’s (NCCN) Practice Guidelines in Oncology for specific cancers.  Most recently, NCCN published new guidelines that include proton therapy for certain head and neck cancers.  Further, the American Society for Radiation Oncology (ASTRO) has recognized the clinical advantages of proton therapy to treat certain types of cancer.  It is used to combat some of the most common cancers in America including lung, breast, esophageal and various types of head and neck cancers.

“Cancer patients should not have to fight so hard to receive doctor-recommended treatment that offers the highest quality of life and best chance for survival,” said Daniel E. Smith, Executive Director of the Alliance for Proton Therapy Access. “When patients who need proton therapy are subjected to insurance denials or a drawn out appeals process, they suffer undue health risks, anxiety and financial hardship at a time when they are already battling to survive cancer, and that’s not fair. We want to shine a light on insurers’ proton therapy decision-making processes – and work with insurers so patients receive fast, fair and transparent coverage decisions.”

The Alliance issued letters to dozens of health insurance companies and radiation oncology benefit management companies across the country, requesting they clarify their proton therapy coverage decision-making processes and policies. By starting an open dialogue with insurers, the Alliance hopes to encourage insurers to adopt proton therapy policies that are consistent, and are based on full knowledge and understanding of proton therapy’s efficacy for treating and delivering best quality of life outcomes for patients with certain types of cancer.

Specifically, the letter calls on insurers to clarify their peer-to-peer review processes by requesting specific answers to the following questions:

  • Does the company offer a peer-to-peer review with a patient’s radiation oncologist and a physician reviewer with experience using proton therapy to treat patients diagnosed with cancer?
  • Does a physician reviewer have the authority to overturn an initial denial?
  • How often do physician reviewers consider cost in their decision making?

The letter also requests additional clarification on medical coverage policies for different insurance products (i.e. Medicaid, Medicare, exchange, and commercial) and uncommon diagnoses for which peer reviewed research is not available. Lastly, the Alliance is asking insurers to clarify their expedited review processes.

“Unexplainable discrepancies in insurance coverage, which inhibit physicians from prescribing and patients from receiving the most appropriate treatment for their illnesses, are far too common in the field of proton therapy,” said Steven Frank, MD, Medical Director at The MD Anderson Cancer Center Proton Therapy Center and Alliance Board member. “If we wish to defeat cancer once and for all, all parties—both doctors and insurers—must finally unite in support of best practices such as proton therapy so that patients avoid facing frustrating and senseless denials for their prescribed cancer treatment.”

A core set of patients’ rights is the key tenet of the “Tell Insurers: Fight Cancer, Not Me” campaign. These rights are simply what patients should be able to expect from their insurance companies when faced with a cancer diagnosis. The goal is to help alleviate unnecessary emotional and physical stress when patients are denied treatment that has been recommended by their physician as the best hope for survival.

These rights can be achieved by demanding the following from health insurers:

  1. Timeliness. Cancer patients deserve prompt answers about whether proton therapy treatment will be covered by their insurance provider.
  2. Transparency. Cancer patients deserve a clear understanding of why their proton therapy is approved or denied by their insurer.
  3. Fairness. Cancer patients deserve a fair determination of coverage for proton therapy, based on the recommendations and analysis of experts in the field, including the treating oncologist.

“When my brother was diagnosed with a brain tumor at age 23, he was regarded as an excellent candidate for proton therapy due to his age and his general prognosis, yet our insurer refused coverage, leaving my family stressed and confused by the complex insurance process. Despite our insurance company’s refusal, we moved forward with the proton plan that his doctors assured us was the best course of care to eliminate his cancer and protect his quality of life,” said Megan Niese, an Alliance advocate and board member. “While my brother has completed treatment and is doing great, my family is paying out of pocket through a payment plan for proton therapy that absolutely should have been covered by our health insurer.”

The Alliance is guided by a Scientific Advisory Committee made up of 12 radiation oncologists representing a variety of specialties and proton centers from across the country to advise the Alliance on research developments to support our advocacy programs.

As long as cancer patients and families across the country continue to face treatment delays and denials for proton therapy, the Alliance will seek increased transparency and fairness in the insurance decision-making process. “We look forward to working with patients, their families and caregivers, physicians and others in the proton community to ensure patients aren’t turned down when proton therapy is their best shot at beating cancer and enjoying the highest quality of life,” concluded Smith.

About The Alliance

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. A Scientific Advisory Committee of leading physician experts from across the proton community provides guidance. Sign up to be an advocate and learn more about the Alliance at Follow the Alliance on Facebook And Twitter and join the conversation at #FightCancerNotMe.