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35 Organizations to CMS: Thank You for Proposal to Discontinue CED on PET Scans

Published August 16, 2023

The Alliance and 34 other organizations today submitted public comment expressing strong support for the Centers for Medicare & Medicaid Services’ (CMS) recent proposal to discontinue the 10-year coverage with evidence development (CED) requirements for Beta Amyloid Positron Emission Tomography (Aβ PET) imaging in dementia and neurodegenerative disease.

Collectively, these organizations represent people living with Alzheimer’s disease and related dementias (ADRD); family caregivers; healthcare providers; researchers; coalitions and advocacy organizations focused on chronic disease, aging, and minority and women’s health; private-sector leaders; and clinical trial sites. The proposal is a significant win for Medicare beneficiaries, as access to PET imaging is imperative in the diagnosis and treatment of ADRD.

The letter endorses covering more than one Aβ PET scan per patient’s lifetime, the removal of restrictions that contain Aβ PET scans to CED-approved studies, and nationally consistent and equitable coverage of scans. The letter expresses concerns about localized coverage discretion potentially causing coverage gaps, and highlighted the value of Aβ PET scans in the diagnosis and management of Alzheimer’s disease. This proposal from CMS is a result of significant patient advocacy on this topic, and truly exemplifies the power of the patient voice. If implemented correctly, the elimination of lifetime coverage limits and other coverage restrictions will enable timely and necessary access to care for all Medicare beneficiaries living with ADRD.

Read the full letter, supported by the following organizations:

  • ADvancing States
  • Alliance for Aging Research
  • Alliance for Patient Access
  • Alzheimer’s Drug Discovery Foundation
  • Alzheimer’s Los Angeles
  • Alzheimer’s New Jersey
  • Alzheimer’s Orange County
  • American Senior Alliance
  • American Society of Consultant Pharmacists (ASCP)
  • BrightFocus Foundation 
  • Caregiver Action Network
  • CaringKind, The Heart of Alzheimer’s Caregiving
  • Chronic Care Policy Alliance
  • Cleveland Clinic Lou Ruvo Center for Brain Health Nevada
  • Family Caregiver Alliance
  • Global Alzheimer’s Platform Foundation
  • Global CEO Initiative on Alzheimer’s Disease
  • Global Coalition on Aging Alliance for Health Innovation
  • HealthyWomen
  • Infusion Providers Alliance
  • Livpact
  • Lupus and Allied Diseases Association, Inc.
  • National Alliance for Caregiving
  • National Brain Health Center for African Americans
  • National Consumers League
  • National Minority Quality Forum
  • National Task Group on Intellectual Disabilities and Dementia Practices
  • Nevada Chronic Care Collaborative
  • NTM Info & Research
  • Partnership to Fight Chronic Disease
  • Patients Rising
  • RetireSafe
  • Society for Women’s Health Research
  • UsAgainstAlzheimer’s
  • Voices of Alzheimer’s

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