Alliance Letter to the White House Office of Public Engagement: RO APM
The Honorable Cedric Richmond
Director of the White House Office of Public Engagement
The White House
1600 Pennsylvania Avenue, N.W.
Washington, DC 20500
Dear Rep. Richmond:
My name is Daniel E. Smith, and I am the Executive Director for the Alliance for Proton Therapy Access. We are based in the Washington, DC area but work closely with patients all over the country. The Alliance was started at the end of 2016 when concerned patients, physicians, clinicians, family caregivers, employers and other stakeholders came together in response to reports from across the country that insurance companies were unfairly restricting or delaying access to proton therapy, a proven targeted weapon in the fight against cancer. In the time since we launched the organization, we have gotten to know hundreds of patients, many of whom come to us because their doctor is saying they need proton therapy for the best outcomes only to turn around and find out that their insurance company will not cover the treatment. We work alongside these advocates to put a stop to these improper denials.
President Biden has committed to make cancer a priority in his Administration and end this disease as we know it. One critical step on the path to ending cancer is making sure that advanced cancer treatments such as proton beam therapy – the most advanced radiation oncology modality – are readily available to the patients who will greatly benefit from them. When President Biden met with doctors at the James Comprehensive Cancer Center at Ohio State University, his enthusiasm about cancer research and proton therapy was unequivocal. As he effusively described the innovation taking place there as “a source of hope,” he encouraged a continued “focus on proton therapy.”
Part of that hope comes from the innovative and groundbreaking research on, and utilization of, proton therapy. Proton beam therapy has a long clinical history, cleared by the Food and Drug Administration (FDA) for use in patients thirty-three years ago. A critical clinical benefit of proton beam therapy is the elimination of excess radiation to healthy tissues and organs, minimizing debilitating and costly side effects. By sparing healthy tissue, proton therapy leads to a decrease in complications, better preservation of quality of life, and for some cancers, higher disease control and overall survival. I am attaching an op-ed that I recently published in Morning Consult about this issue.
The Center for Medicare and Medicaid Innovation (CMMI) has ignored the voice of physicians, patients, and the cancer research community as evident by the recently released RO APM. The RO APM undervalues proton therapy by establishing the same payment rates for all radiation treatment modalities without regard for the investment required to deliver this type of radiation. It sets complex adjustments and methodology that is intended to provide a glidepath to equal reimbursement for drastically different priced modalities. These substantial cuts in reimbursement put financial pressure on institutions already burdened by the impact of the ongoing pandemic, thus, straining their ability to ensure quality care and participate in clinical research. CMMI should exclude proton therapy from the RO Model just as they have proposed to exclude brachytherapy due to its unique and complicated concerns over patient access to specialized care.
With only 38 cancer centers providing proton therapy, access for patients will be even more limited, leading to an even wider gap in disparities for cancer patients seeking advanced and specialized treatment. While other countries are actively expanding access to proton therapy, the RO APM will discourage the use and adoption of this cancer treatment in the United States. This technology and other advanced treatments should not be restricted but should be nurtured and encouraged to be accessible to physicians delivering care and patients who receive it. This is a misguided policy that undermines President Biden’s commitment to end cancer by jeopardizing innovation and research, the very concepts that are critical in the fight to end cancer as we know it.
I urge you to support cancer innovation by asking President Biden to instruct CMS to exclude proton therapy from a value-based model that fails to take into account its unique, innovative nature and value to Medicare patients.
I appreciate your thoughtful consideration of this very important issue.
Daniel E. Smith
Executive Director Alliance for Proton Therapy Access
Read the full letter here.