The EveryLife Foundation submits comments to the Centers for Medicare and Medicaid Services (CMS) on the Physician Fee Schedule Proposed Rule for 2021

The EveryLife Foundation, with guidance from the Community Congress Access Working Group leadership, submitted comments to the Centers for Medicare and Medicaid Services (CMS) on the Physician Fee Schedule Proposed Rule for 2021. Each year CMS must set payment rates for services provided in the outpatient setting (the physician fee schedule) but the proposed rule also addresses important payment policies that can shape how and what services are accessible to people with rare diseases.

The Proposed Rule for 2021 continued to detail policies that will lead to greater access to telehealth services for Medicare beneficiaries. EveryLife’s comments highlighted the benefits of this expanded access while stressing the unique needs of the rare disease community that CMS should consider as they pursue additional telehealth changes. Comments also stressed the importance of preserving the role of in-person care and patient choice, the need to leverage opportunities to collect and use outcomes data from government and non-governmental sources to inform future telehealth policies and highlighted our commitment to a series of principles for telehealth policy change outlined by the National Health Council. These principles focus on equitable coverage, easing technology barriers, preserving and promoting patient choice, removing geographic restrictions, protecting patients and provider legal rights and increasing the evidence base for telehealth.

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About the EveryLife Foundation for Rare Diseases
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.

A disease is defined as rare when it affects fewer than 200,000 people in the United States. On average, rare disease patients must wait an average of six years after symptoms first present before receiving a proper diagnosis. Ninety-three percent of the 7,000 known rare diseases have no U.S. Food and Drug Administration-approved therapies. Fifty percent of rare disease patients are children, thirty percent of whom will not live to see their fifth birthdays.