Our Activities
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As a leading national voice in dementia policy, LEAD Coalition member organizations and other allies often participate in public comments and sign-on letters to educate policymakers on critical issues facing our community and to advocate for change. Recent activities of the LEAD Coalition include:
- Helping secure $3.8 billion in annual dementia research funding for the National Institutes of Health through the congressional appropriations process.
- Leading federal advocacy for the National Research Summits on Care, Services, and Supports for Persons with Dementia and their Caregivers, which have been held in 2017, 2020, and 2023.
- Helping secure Medicare coverage for the first two FDA traditionally approved treatments to slow the progression of mild cognitive impairment and mild dementia due to Alzheimer’s disease.
- Advocating for CMS to provide full national coverage of PET beta amyloid (Aß PET) imaging for the diagnosis and ongoing care of people with Alzheimer’s disease.
- Advocating for CMS to adopt hospital geriatrics quality measures with a focus on the needs of people living with dementia.
- Advocating for legislation to expand Medicare and Medicaid support for people living with dementia and their caregivers and to strengthen the public health response to dementia.
- Providing public comments to CMS on the 2017 Physician Fee Schedules Provision on “Assessment and Care Planning for Patients with Cognitive Impairment.”
- Supporting the Alzheimer’s Caregiver Support Act and the Alzheimer’s Beneficiary and Caregiver Support Act.
National Legislative Initiatives
The LEAD Coalition educates and advises non-governmental organizations and Congress regarding legislation that would accelerate (or jeopardize) transformational progress in: (1) care and support to enrich the quality of life of those with dementia and their caregivers; (2) detection and diagnosis; and (3) research leading to prevention, effective treatment, and eventual cures. In recent years, the LEAD Coalition has been engaged in a wide variety of legislation including the 21st Century Cures Act (Pub.L. 114 – 255), the Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer’s Act (Pub. L. 115 – 406), the FDA User Fee Reauthorization Act of 2022 (Pub. L. No. 117-180), the Concentrating on High-Value Alzheimer’s Needs to Get to an End (CHANGE) Act, the Palliative Care and Hospice Education and Training (PCHETA) Act, and the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act (Pub. L. 115 – 119).
The LEAD Coalition is tracking these pieces of legislation relevant to the Alzheimer’s and dementia community. Details about these bills and additional legislation will be added periodically.
- FLY Act (H.R. 321)
- Telehealth Expansion Act of 2025 (S. 763)
- Lifespan Respite Care Reauthorization Act (S.830 / H.R. 2560)
- Veteran Caregiver Reeducation, Reemployment, and Retirement Act (S. 879 / H.R.2148)
- Credit for Caring Act (S. 925 / H.R. 2036)
- Alleviating Barriers for Caregivers (ABC) Act (S. 1227 / H.R. 2491)
- Concentrating on High-Value Alzheimer’s Needs to Get to an End (CHANGE) Act (S. 1799 / H.R. 3501)
- Older Americans Act (OAA) Reauthorization Act (S.2120)
- Palliative Care and Hospice Education and Training Act (S. 2287 / H.R. 4425)
- Global Alzheimer’s Initiative Now (GAIN) Act (H.R.3674)
- Accelerating Access to Dementia & Alzheimer’s Provider Training (AADAPT) Act (H.R. 3747)
Federal Appropriations
LEAD Coalition members and allies relentlessly advocate for increased federal funding to strengthen dementia care, support, and science. As a result of our collaborative work and remarkable bi-partisan support from Congress, NIH now devotes more than $3.7 billion annually to research focused on preventing and treating Alzheimer’s disease and other forms of dementia, improved detection, and improving quality of life among people living with these diseases and their caregivers. Our advocacy — along with that of the broader health and aging community — helped produce significant increases in Fiscal Year 20231 funding for a variety of social safety net programs vital to the wellbeing of people living with dementia and the caregivers.
FY 2025 Appropriations
May 3, 2024 | Download
FY 2024 Appropriations
June 28, 2023 | Download
FY 2023 Appropriations (U.S House)
May 19, 2022 | Download
FY 2023 Appropriations (U.S Senate)
May 19, 2022 | Download
FY 2022 Appropriations (U.S House)
May 27, 2021 | Download
FY 2022 Appropriations (U.S Senate)
May 27, 2021 | Download
FY 2021 Appropriations (U.S House)
May 22, 2020 | Download
FY 2021 Appropriations (U.S Senate)
May 22, 2020 | Download
FY 2020 Appropriations (U.S House)
April 26, 2019 | Download
FY 2020 Appropriations (U.S Senate)
April 26, 2019 | Download
FY 2019 Appropriations (U.S House)
April 24, 2018 | Download
FY 2019 Appropriations (U.S Senate)
April 24, 2018 | Download
FY 2018 Appropriations (U.S House)
March 22, 2017 | Download
FY 2018 Appropriations (U.S. Senate)
March 22, 2017 | Download
FY 2017 Appropriations (U.S House)
November 11, 2016 | Download
FY 2017 Appropriations (U.S. Senate)
November 11, 2016 | Download
FY 2017 Appropriations (U.S House)
March 10, 2016 | Download
FY 2017 Appropriations (U.S. Senate)
March 10, 2016 | Download
FY 2016 Omnibus Appropriations Bill (U.S. House)
November 18, 2015 | Download
FY 2016 Omnibus Appropriations Bill (U.S. Senate)
November 18, 2015 | Download
FY 2016 Appropriations (U.S. House)
March 18, 2015 | Download
FY 2016 Appropriations (U.S. Senate)
March 18, 2015 | Download
Regulatory and Other Public Comments
LEAD Coalition submits comments on FDA draft guidance for the study of sex differences in the clinical evaluation of medical products
April 7, 2025 | Download
LEAD Coalition submits comments on Congressional framework for reforming the NIH
August 16, 2024 | Download
LEAD Coalition Supports Passage of the CHANGE Act
September 27, 2023 | Download
LEAD Coalition urges CMS to adopt geriatrics quality measures
June 8, 2023 | Download
LEAD Coalition urges FDA to apply regulatory flexibility in review of aducanumab
January 20, 2021 | Download
LEAD Coalition urges CMS-CDC committee to align ICD-10 coding of mild cognitive impairment with clinical practice
November 9, 2020 | Download
LEAD Coalition urges USPSTF to upgrade its draft recommendation on cognitive screenings for people 65 and older
October 27, 2019 | Download
LEAD Coalition urges CMS to revise MedLearn instructions, improve cognitive impairment assessment
September 25, 2019 | Download
LEAD Coalition Encourages HHS to Strengthen Dementia Objectives in Healthy People 2030 Plan
January 17, 2019 | Download
LEAD Coalition Letters to Congress Supporting the Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer’s Act
March 6, 2018 | Download
LEAD Coalition Comment on CMS Innovation Center Request for Information
November 20, 2017 | Download
LEAD Coalition Executive Director Response to HHS Draft Strategic Plan 2018-2022 (HHS)
October 26, 2017 | Download
LEAD Coalition Comment on the Proposed 2018 Physician Fee Schedule (CMS)
September 11, 2017 | Download
LEAD Coalition Executive Director Comments on Draft Research Plan for Cognitive Impairment in Older Adults: Screening (USPSTF)
July 26, 2017 | Download
LEAD Coalition Comment on the Proposed 2017 Physician Fee Schedule (CMS)
September 6, 2016 | Download
LEAD Coalition Comment on a Framework for an NIH-Wide Strategic Plan (NIH)
August 19, 2015 | Download
LEAD Coalition Letter Proposing Dementia Care and Services Research Summit (HHS)
May 18, 2015 | Download
LEAD Coalition Letter Requesting U.S. Support at WHO Ministerial Meeting (HHS)
February 13, 2015 | Download
LEAD Coalition Letter to the 2015 White House Conference on Aging (The White House)
July 16, 2014 | Download