Sign onto the LEAD Coalition/Alzheimer’s Association/AIM letter urging Congress Members to co-sponsor the Alzheimer’s Screening and Prevention (ASAP) Act

The LEAD Coalition, in collaboration with the Alzheimer’s Association and Alzheimer’s Impact Movement (AIM), has prepared a sign-on letter urging Congress Members to co-sponsor the Alzheimer’s Screening and Prevention Act (H.R. 6130/S.3267). This bipartisan, bicameral legislation, introduced by Congressmen Vern Buchanan (R-FL) and Paul Tonko (D-NY), and Senators Susan Collins (R-ME) and Catherine Cortez Masto (D-NV), aims to ensure timely access to innovative screening tests that can detect Alzheimer’s disease and related forms of dementia in their earliest stages.

Under current law, Medicare can cover only preventive services that Congress has specifically authorized or that are recommended by the U.S. Preventive Services Task Force (USPSTF). This process can delay coverage for years after screening tests receive Food and Drug Administration (FDA) approval. The ASAP Act modernizes that process by authorizing the Secretary of Health and Human Services to provide Medicare coverage for FDA-approved or cleared blood-based biomarker tests for the early detection of Alzheimer’s and other dementias. For more information about the ASAP Act, read the Alzheimer’s Impact Movement press release and the ASAP Act Fact Sheet.

Action opportunity: LEAD Coalition member and allied organizations and researchers are encouraged to review the ASAP Act support letter and complete one of the sign-on forms (form for organizations; form for researchers) by Friday, March 6. For any questions about the letter, please reach out to Ian Kremer or Courtney Wallin.

Register for the 2026 NIH Dementia Care and Caregiving Research Summit

The National Institutes of Health (NIH) Dementia Care and Caregiving Research Summit will be held virtually on March 17-19, 2026. The Summit offers a vital opportunity to reflect on the progress in dementia care and caregiving research and to address the persistent and emerging needs of persons living with dementia, their care partners, and the communities and health systems that support them. The goal of the Care Summit is to review research progress, highlight innovative and promising research, and identify remaining unmet research needs with input from researchers, persons living with dementia, care partners, and other interested parties. This Summit will build on research progress made in dementia care and caregiving research since NIH’s summits in 2017, 2020, and 2023. The 2026 Dementia Care and Caregiving Research Summit will cover: 

• Economic impacts of dementia 
• Individual and community partnerships for living with dementia 
• Dementia care and caregiving interventions: advancing rigorous intervention development 
• Dementia care models and care coordination strategies across systems and states 
• Advances in Alzheimer’s disease (AD) and AD-related dementias data infrastructure to support dementia care and caregiving research 
• Sharing lived experiences from persons living with dementia, care partners, and family and community members 

Action opportunity: LEAD Coalition member organizations and allies are encouraged to register for the sessions using the following links:

• Summit Day 1 Registration (March 17, 12:30–5:30pm ET)
• Summit Day 2 Registration (March 18, 1:00–5:30pm ET)
• Summit Day 3 Registration (March 19, 1:00–3:00pm ET)
• Early Career Investigator Event Registration (March 19, 11:00am–12:30pm ET)
• Post-Summit Listening Session Registration (March 19, 3:15pm ET)

For any questions, individuals are encouraged to reach out to the Dementia Care Summit Planning Team at NIADementiaCareSummit@mail.nih.gov. 

Submit public comments on FDA draft guidance for patient preference studies

The Food and Drug Administration (FDA) has announced the availability of a draft guidance for industry entitled “E22 General Considerations for Patient Preference Studies” (FDA-2026-D-0207). When finalized, this guidance is expected to provide general principles for the use, design, conduct, analysis, and submission of patient preference studies (PPS) aimed at informing drug development, regulatory submission and evaluation, drug approvals, and maintenance of such approvals. The draft guidance was prepared under the auspices of the International Council for Harmonisation of Technical Requirements for Pharmaceuticals for Human Use (ICH), which brings together regulatory authorities and the pharmaceutical industry to discuss the scientific and technical aspects of pharmaceutical development.. 

Action Opportunity: LEAD Coalition member and allied organizations are encouraged to review the draft guidance and provide comments via the Federal Register (FDA-2026-D-0207) by the April 7 deadline.

Attend and participate in the IPAY 2028 public engagement events on Rexulti

The Centers for Medicare & Medicaid Services (CMS) recently announced 15 selected drugs for the Medicare Drug Price Negotiation Program (MDPNP): Initial Price Applicability Year 2028 (IPAY 2028), As part of the negotiation process, CMS hosts public engagement events to encourage patients, caregivers, clinicians, and others to share their experience relevant to the drugs selected for negotiation and renegotiation. CMS seeks input related to clinical benefits of the selected drugs compared to therapeutic alternatives, how the selected drugs address unmet needs, and how the selected drugs impact specific populations.

This April, CMS will host one patient-focused roundtable per selected drug and two livestreamed town hall meetings during which all drugs will be covered. The roundtables are open to patients, representatives of patient advocacy organizations, and caregivers selected to speak at the events, and will allow for discussion among speakers. All stakeholders are welcome to attend and participate in the town hall meeting. 

CMS will use the information shared during the roundtable events to better understand patients’ experiences with the conditions and diseases treated by the selected drugs and patients’ experiences with the selected drugs themselves. CMS will use the information shared during the town hall meeting to better understand clinicians’ experiences prescribing and/or managing treatment with the selected drugs or their therapeutic alternatives and clinicians’ considerations that drive treatment choice between the selected drugs and therapeutic alternatives.

Among the drugs selected for this round of the MDPNP include Rexulti (brexpiprazole), the first FDA-approved treatment of agitation associated with dementia due to Alzheimer’s disease. The Rexulti roundtable will occur on April 14 from 2:30pm-4:30pm ET; the drug also will be discussed during the April 22 townhall meeting.

Action Opportunity: Interested parties are encouraged to attend and/or speak at these IPAY 2028 engagement events. Individuals may register here for roundtable events and here for townhall meetings by the March 6 deadline. Written statements may be submitted here by the March 1 deadline.  For more information and guidance on IPAY2028, review the National Health Council’s comprehensive overview of the program and a detailed patient and provider toolkit.

Apply for funding from the Bureau of Justice Assistance’s “Kevin and Avonte Program”

The Bureau of Justice Assistance (BJA), part of the U.S. Department of Justice, has released a funding opportunity for the The Kevin and Avonte Program: Reducing Injury and Death of Missing Individuals with Dementia and Developmental Disabilities (O-BJA-2025-172473). This funding opportunity seeks to support public safety efforts to reduce deaths and injuries of people living with forms of dementia or developmental disabilities who wander from safe places. 

The grant program will fund the development or operations of wandering prevention, intervention, and rescue programs. The goal of this grant program is to reduce deaths and injuries with solutions that minimize restrictive interventions, provide a direct link to individuals and families, and impose limits only when essential for a person’s safety and well-being. The program anticipates making 16 awards of up to $150,000 in total value per award. 

Action Opportunity: Interested organizations are encouraged to submit applications by the February 20 deadline on Grants.gov or February 27 deadline on JustGrants. For more information about the program and funding opportunity, individuals may review the opportunity overview.

Respond to NIH RFI on draft proposal harmonizing research participant data policies

The National Institutes of Health (NIH) has released a request for information (NOT-OD-26-023) on a proposed Controlled-Access Data Policy and revisions to the Genomic Data Sharing (GDS) Policy. The draft Controlled-Access Data Policy specifies which human participant data require controlled access, establishes criteria for assessing additional data types, and standardizes expectations across NIH Institutes, Centers, and Offices. Proposed revisions to the GDS Policy aim to adapt requirements and clarify data submission and consent procedures for human genomic data.

Action Opportunity: LEAD Coalition member organizations and allies are encouraged to provide feedback on the proposed policies, including the identification of data requiring controlled access and revisions to genomic data sharing practices. The deadline to submit comments is March 18.

Respond to NIH RFI on drug development to prevent or treat specific aging-related conditions

The National Institute on Aging (NIA) has released a request for information (RFI; NOT-AG-26-001) on the development of disease-modifying drugs to prevent or treat specific aging-related conditions. There is evidence that some biologic mechanisms contribute both to physiologic aging changes and to specific aging-related conditions, but few drugs expressly target these mechanisms to modify such conditions.

The RFI seeks input from academic and industry stakeholders who have identified relevant therapeutic targets or are actively developing such drugs. Responses to the RFI will aid NIA in assessing the extent to which potential mechanistic targets for interventions have been identified and validated and will inform planning for possible drug development research initiatives.

Action Opportunity: LEAD Coalition member organizations and allies are encouraged to submit comments to NIA_DrugDevelopment@NIH.gov by the July 1 deadline.

Urge Members of Congress to co-sponsor dementia-specific legislation

Credit for Caring Act

Representatives Mike Carey (R-OG) and Linda Sanchez (D-CA), and Senators Shelley Moore Capito (R-WV) and Michael Bennet (D-CO) have introduced the Credit for Caring Act (S. 925 / H.R. 2036). The bipartisan legislation would create a new, non-refundable federal tax credit of up to $5,000 for eligible family caregivers with an earned income of at least $7,500 for the taxable year, if their care recipient meets certain functional or cognitive limitations or other requirements certified by a licensed health care practitioner. Individuals with higher incomes would either be ineligible for the tax credit or receive a reduced amount. In 2023, Alzheimer’s caregivers provided 18.4 billion hours of unpaid care, valued at nearly $350 billion. In 2021, dementia caregivers bore, on average, $12,388 in out-of-pocket costs on behalf of the person living with dementia. As a result of this financial strain, many families significantly cut back on savings contributions and other spending, some reporting eating less due to care costs. Of the total lifetime cost of caring for someone with dementia, 70% is borne by families — either through out-of-pocket health and long-term care expenses or from the value of unpaid care. These out-of-pocket costs include medical care, household expenses for their loved one, and respite services. With 41% of caregivers having a household income of $50,000 or less, there is an urgent need to alleviate the overwhelming costs faced by caregivers. For additional information, read the Alzheimer’s Impact Movement blog post.

Concentrating on High-Value Alzheimer’s Needs to Get to an End (CHANGE) Act

Senators Shelley Moore Capito (R-WV) and Mark Warner (D-VA) have reintroduced the Concentrating on High-Value Alzheimer’s Needs to Get to an End (CHANGE) Act, bipartisan legislation to encourage early assessment and diagnosis of Alzheimer’s. Companion legislation was also introduced in the U.S. House of Representatives by Representatives Linda T. Sánchez (D-CA), Darren LaHood (R-IL), Doris Matsui (D-CA), and Gus Bilirakis (R-FL). The CHANGE Act (S. 1799 / H.R. 3501) would better utilize the existing Welcome to Medicare initial exam and Medicare annual wellness visits to screen, detect, and diagnose Alzheimer’s and related dementias in their earliest stages. An early documented diagnosis communicated to the patient and caregiver enables timely access to care planning services along with available medical and non-medical treatments, and optimizes peoples’ ability to build a care team, participate in support services, and enroll in clinical trials. For additional information, see the bill text.

Accelerating Access to Dementia & Alzheimer’s Provider Training (AADAPT) Act

Representatives Troy Balderson (R-OH), Nanette Barragán (D-CA), Darin LaHood (R-IL) and Paul Tonko (D-NY) have reintroduced the bipartisan Accelerating Access to Dementia & Alzheimer’s Provider Training (AADAPT) Act (H.R. 3747). The AADAPT Act would provide grants to providers participating in structured Alzheimer’s and dementia virtual education programs to build on their knowledge of detection, diagnosis, care, and treatment of Alzheimer’s and other forms of dementia. The legislation would address knowledge gaps and workforce capacity issues being faced by primary care providers across the nation, connecting their practices with dementia care experts using free, remote continuing education. These programs have added importance in reaching rural and medically underserved areas where primary care providers are especially strained. Read the full legislative text.

Bridging Relief in Delayed Government Enrollment (BRIDGE) for Young Onset Alzheimer’s Disease Act

The Bridging Relief in Delayed Government Enrollment (BRIDGE) for Young Onset Alzheimer’s Disease Act of 2025 (H.R. 6799) would provide more timely coverage of treatment and care for individuals living with young-onset Alzheimer’s by removing the 29-month waiting period for individuals under the age of 65 to qualify for Medicare after obtaining Social Security Disability Insurance. For more information, please see the one-pager.

Global Alzheimer’s Initiative Now (GAIN) Act

Representatives Ami Bera (D-CA), Brian Fitzpatrick (R-PA) and Young Kim (R-CA) have reintroduced the bipartisan Global Alzheimer’s Initiative Now (GAIN) Act (H.R.3674). The GAIN Act would authorize the United States to participate formally in the Davos Alzheimer’s Collaborative (DAC), a global public–private–patient partnership advancing Alzheimer’s and dementia research, diagnosis, treatment, and care. Alzheimer’s and dementia affect nearly 60 million people globally and cost the world economy more than $1.3 trillion annually—an amount that doubles every decade. DAC aims to raise and deploy $700 million over six years and currently supports 19 health systems in 12 countries, including the United States. Read the full legislative text.

Action opportunity: LEAD Coalition member organizations and allies are encouraged to urge Members of Congress to co-sponsor and press for swift committee and floor passage of these important pieces of legislation. 

Support the Geriatrics Workforce Improvement Act

U.S. Senators Susan Collins (R-ME) and Tim Kaine (D-VA) have introduced the Geriatrics Workforce Improvement Act (S.2699) to reauthorize funding for the Geriatrics Workforce Enhancement Program (GWEP) and the Geriatrics Academic Career Awards (GACA). Both programs were last authorized in 2020 as part of the CARES Act and are set to expire at the end of September, 2025. The Geriatrics Workforce Improvement Act would reauthorize the GWEP and GACA programs at a combined $48.2 million per year over the next five years.

The GWEP is the only federally funded program that exists to educate and train health professionals in geriatrics. There are currently 42 GWEP recipients. GACA support early-career training of junior faculty to develop emerging leaders in geriatric education and clinical care. There are currently 25 GACA recipients funded under four-year awards through June of 2027.

Action opportunity: LEAD Coalition member organizations and allies are encouraged to urge Members of Congress to co-sponsor and press for swift committee and floor passage of the Geriatrics Workforce Improvement Act.

Support the Older Americans Act (OAA) Reauthorization Act

The Older Americans Act (OAA) Reauthorization Act (S.2120) has been reintroduced in the Senate by Senators Bill Cassidy (R-LA), Bernie Sanders (I-VT), Rick Scott (R-FL), Kirsten Gillibrand (D-NY), Susan Collins (R-ME), Tim Kaine (D-VA), Markwayne Mullin (R-OK), Edward Markey (D-MA), Lisa Murkowski (R-AK), and Ben Ray Luján (D-NM).. The legislation would renew funding and strengthens services for American seniors. Senator Collins is an original cosponsor of the bill, and she was a member of the bipartisan working group that authored this legislation. Since 1965, the OAA has supported and improved the lives of seniors—particularly those who are low-income—through programs that promote nutrition, improve transportation options, support caregivers, offer employment and community service opportunities, and prevent abuse and neglect. This critical law was last reauthorized in 2020.

Specifically, this legislation would reauthorize OAA programs through Fiscal Year 2030 and make improvements to promote innovation and flexibility, strengthen program integrity, and better support family caregivers and direct care workers. The bill also takes steps to better serve Tribal seniors and those with disabilities in their communities. The OAA authorizes an array of services through a network of 56 State Units on Aging and more than 600 Area Agencies on Aging serving older Americans throughout the nation. In the last year alone, OAA programs served more than 12 million caregivers and older adults, including providing more than 2.4 million seniors with at-home or congregate meals.

Action opportunity: LEAD Coalition member organizations and allies are encouraged to urge Members of Congress to co-sponsor and press for swift committee and floor passage of the Older Americans Act (OAA) Reauthorization Act.

Support the Lifespan Respite Care Reauthorization Act

Senators Susan Collins (R-ME) and Tammy Baldwin (D-WI) have introduced the Lifespan Respite Care Reauthorization Act of 2025, bipartisan legislation to support the health and wellbeing of family caregivers. The legislation would reauthorize, at $50 million over five years, the Administration on Community Living (ACL) Lifespan Respite Care Program, which provides critical short-term relief to unpaid caregivers. Companion legislation was introduced by Representatives Nick Langworthy (R-NY) and Jill Tokuda (D-HI), which would reauthorize the program through fiscal year 2029. Both versions of the bill (S.830 / H.R. 2560) broaden the definition of a family caregiver, replacing “unpaid adult” with “unpaid individual.” As an essential component of home- and community-based long-term services, these respite services contribute to healthier families and the health and well-being of caregivers and care recipients. For additional information, see the Senate bill text and this letter of support.

Action opportunity: LEAD Coalition member organizations and allies are encouraged to urge Members of Congress to co-sponsor and press for swift committee and floor passage of the Lifespan Respite Care Reauthorization Act of 2025.