Our Activities


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:

  • Supporting a final push for at least $1.8 billion in new funding for dementia care, support, and research programs through the FY2018 congressional appropriations process.
  • Leading federal advocacy for the 2017 National Research Summit 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
  • 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

Members of the LEAD Coalition and other allies are proud to support these recent legislative initiatives related to Alzheimer’s disease and other forms of dementia.

Alzheimer’s Caregiver Support Act (S. 3113 and H.R. 3090)
This proposed legislation would amend the Public Health Service Act to authorize the Department of Health and Human Services to create new grants for public and private health care providers. Grants would go toward training and support services for family caregivers of individuals with Alzheimer’s disease. Grantees would include community-based organizations with the capacity to provide culturally competent programming for individuals and families. Members of the LEAD Coalition and other allies supported this legislation in formal letters to the congressional sponsors in the U.S. Senate and House on August 18, 2016.

Alzheimer’s Beneficiary & Caregiver Support Act (S. 3137 and H.R. 5681)
This proposed legislation would require the Centers for Medicare and Medicaid Innovation (CMMI) to create a demonstration project to test the efficacy of providing family caregiver support services to caregivers of people living with Alzheimer’s disease or a related dementia. The support services would include a defined set of counseling sessions for patients and families, a caregiver assessment, and consultations to support the family caregiver as the need arises. Members of the LEAD Coalition and other allies supported this legislation in formal letters to the congressional sponsors in the U.S. Senate and House on August 18, 2016.

The Ensuring Useful Research Expenditures is Key for Alzheimer’s (EUREKA) Act (S. 2067 and H.R. 5073) (Included in the 21st Century Cures Act of 2016)
This proposed legislation would accelerate research and the development of tools and policies that can support people living with Alzheimer’s disease or other forms of dementia. The act would also accelerate the review process at the Food and Drug Administration and create prize competitions to reward innovators in dementia. Members of the LEAD Coalition and other allies supported this legislation in a formal letter to the U.S. Senate Health, Education, Labor and Pensions (HELP) Committee on November 20, 2015. The provisions of the act were included in part in the 21st Century Cures Act of 2016 (H.R. 34).

A Resolution on the National Plan to Address Alzheimer’s Disease (S. Res. 74)
This resolution expresses the commitment of the United States Senate to strengthen the quality of care and support for individuals with Alzheimer’s disease and other forms of dementia and their family. Members of the LEAD Coalition and other allies supported this initiative in a formal letter to bill sponsor U.S. Senator Collins on February 16, 2015.

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Federal Appropriations

Members of the LEAD Coalition and other allies have continued to push for greater funding for research and services for individuals and families living with Alzheimer’s disease and other forms of dementia. Our shared advocacy efforts in 2015 were successful in persuading the U.S. Congress to increase federal appropriations in FY2016 for Alzheimer’s disease and dementia research by $350 million to a total NIH investment of $991 million.

For the Fiscal Year 2017, members of the LEAD Coalition and other allies supported letters to the U.S. House and Senate calling for an increase of at least $1 billion in dementia care, support, and research programs.

Members of the LEAD Coalition and other allies participate annually in the appropriations process through sign-on letters to members of Congress, grassroots advocacy, and meetings on Capitol Hill and in district offices.

FY 2018 HHS Appropriations (U.S House)
March 22, 2017 | Download

FY 2018 HHS Appropriations (U.S. Senate)
March 22, 2017 | Download

FY 2017 HHS Appropriations (U.S House)
November 11, 2016 | Download

FY 2017 HHS Appropriations (U.S. Senate)
November 11, 2016 | Download

FY 2017 HHS Appropriations (U.S House)
March 10, 2016 | Download

FY 2017 HHS 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 HHS Appropriations (U.S. House)
March 18, 2015 | Download

FY 2016 HHS Appropriations (U.S. Senate)
March 18, 2015 | Download

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Regulatory and Other Public Comments

LEAD Coalition Comment on the Proposed 2018 Physician Fee Schedule (CMS)
September 11, 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

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