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 $3.1 billion in dementia research funding for the National Institutes of Health, including an additional $350 million through the Fiscal Year 2021 congressional appropriations process.
- Leading federal advocacy for the 2017 and 2020 National Research Summits on Care, Services, and Supports for Persons with Dementia and their Caregivers.
- 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 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.
- Alzheimer’s Caregiver Support Act (H.R. 1474/S.56)
- Americans Giving Care to Elders (AGE) Act of 2021 (S.234)
- Quality Care for Nursing Home Residents Act (S.315)
- Seniors Fraud Prevention Act of 2021 (S.349)
- A bill to provide continued funding for services under the Older Americans Act of 1965, and for other purposes. (S.440)
- A bill to amend titles XVIII and XIX of the Social Security Act to modernize Federal nursing home protections and to enhance care quality and transparency for nursing home residents and their families. (S.782)
- A bill to amend title II of the Social Security Act to eliminate the five-month waiting period for disability insurance benefits under such title and waive the 24-month waiting period for Medicare eligibility for individuals with Huntington’s disease. (S.868)
- COVID–19 Prevention and Awareness Act of 2021 (H.R.173)
- Adult Day Center Enhancement Act (H.R.253)
- Quality Care for Nursing Home Residents and Workers During COVID–19 and Beyond Act (H.R.598)
- Medicare Hearing Aid Coverage Act (H.R.1106)
- To amend title XIX of the Social Security Act to make permanent the protections under Medicaid for recipients of home and community-based services against spousal impoverishment. (H.R.1717)
- Comprehensive Care for Alzheimer’s Act (H.R. 2517/S.1125)
Federal Appropriations
Members of the LEAD Coalition and other allies have continued to push for increased federal funding to strengthen dementia care, support and science. As a result of our shared advocacy and remarkable bi-partisan support from Congress, NIH now devotes more than $3.1 billion annually to research focused on preventing and treating Alzheimer’s disease and other forms of dementia along with research to improve 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 2021 funding for a variety of social safety net programs vital to the wellbeing of people living with dementia and the caregivers, programs such as pandemic response, home delivered meals, family caregiver respite, adult protective services, and programs to address wandering.
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 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