Dear Secretary Becerra,
The Milken Institute Center for the Future of Aging launched the Alliance to Improve Dementia Care (the “Alliance”) in July 2020 to implement recommendations outlined in a report, Reducing the Cost and Risk of Dementia. The Alliance employs a multisectoral approach to improve timely detection, increase access to treatment and coordinated care, and advance health equity for people at risk for and living with dementia and their caregivers.
The Alliance sits at a unique intersection of the nonprofit, public, and private sectors, enabling the engagement of more than 90 stakeholders from health systems, industry, research, advocacy, philanthropy, community-based organizations, government, and people living with dementia and caregivers. We leverage our members’ collective expertise and experience to create consensus-built recommendations on practices and policies to improve dementia care and focus on developing collaboration across a wide range of domains.
Given our diverse membership, we have heard strong and divergent opinions about the Centers for Medicare & Medicaid Services’ (CMS) proposed National Coverage Determination for monoclonal antibodies targeting amyloid to treat Alzheimer’s disease. As a trusted convener, the Alliance will not weigh in directly on the details of the decision. We agree that CMS’ proposed decision (which would apply to an entire class of drugs) as well as the Food and Drug Administration’s accelerated approval of Aduhelm has critical implications for the future of dementia care.
There is a growing shortage of health-care and long-term care providers with training in geriatrics and dementia care. Despite being a leading cause of death in the US, dementia is currently underdiagnosed or caught at later stages. As new therapies become available, it is critical that people at risk for and living with dementia are screened and diagnosed at the earliest stages of disease progression. In May, the Alliance released recommendations to build workforce capacity to improve detection and diagnosis of dementia. In the report, we offer guidance for policymakers on best practices and existing solutions.
The Alliance embraces the following principles for any disease-modifying therapy that slows or stops the progression of Alzheimer’s disease and related dementias or any biomarker or tool that aids in diagnosing dementia:
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Ensure equitable access to clinical trials, especially for traditionally underrepresented populations;
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Promote health system and workforce readiness to increase earlier detection and diagnosis of dementia;
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Encourage continued investment and innovation in the treatment space, which includes disease-modifying therapies, biomarkers and other diagnostic tools, and payment for and delivery of dementia care across the US health-care system.
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Support the development of a nationwide, pilot program to test and expand comprehensive dementia-care models. Comprehensive dementia care is person-centered and should include several core elements, such as continuous monitoring and assessment, coordination of care, and caregiver support, as outlined in our most recent report on Scaling Comprehensive Dementia-Care Models. We urge CMS to expand and test existing comprehensive care models across a larger population to better align incentives among payers, providers, and patients, to ensure that individuals living with dementia and their caregivers receive more seamless, coordinated health-care and long-term care.
We appreciate your attention to this important matter. We look forward to continuing to work with you on efforts to improve care for the millions of Medicare and Medicaid beneficiaries at risk for or living with dementia.
Sincerely,
Nora Super
Executive Director
Center for the Future of Aging
Alliance to Improve Dementia Care
Milken Institute