DeOndra Dixon INCLUDE Project Act of 2025
- Bill Number
- S. 1838
- Origin Chamber
- Senate
- Congress
- 119th Congress, Session 1
- Policy Area
- Health
- Status
- Introduced
- Latest Action
- 2025-05-21: Read twice and referred to the Committee on Health, Education, Labor, and Pensions.
- Last Updated
- 2025-09-17T11:03:17Z
AI-Generated Summary
Purpose of the Legislation
The DeOndra Dixon INCLUDE Project Act of 2025 aims to advance scientific understanding and improve health outcomes for individuals with Down syndrome by authorizing the U.S. Department of Health and Human Services (HHS) to establish and fund a dedicated research program. This program, called the INCLUDE Project (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE), focuses on studying Down syndrome—a genetic condition caused by an extra copy of chromosome 21—and related health issues.
Key Provisions
- Findings Section: Outlines key facts about Down syndrome, including its prevalence (about 1 in 700 U.S. births), physical and intellectual challenges, increased life expectancy (from 10 years in 1960 to nearly 60 today), societal contributions of affected individuals, and heightened risks for conditions like heart disease, leukemia, and Alzheimer's disease.
- Establishment of the INCLUDE Project: Directs the Secretary of HHS, through the National Institutes of Health (NIH), to conduct or fund research, training, and investigations on Down syndrome. This can be done directly or via grants/contracts, in consultation with other federal agencies and partners.
- Program Elements: The project must address:
- Basic science studies on how chromosome 21 affects development and health.
- Building and maintaining a large study group of people with Down syndrome.
- Increasing clinical trials (tests of new treatments) that include or target individuals with Down syndrome, such as drugs or therapies to improve daily activities.
- Biological reasons for physical, cognitive, and growth issues in Down syndrome.
- Identifying biomarkers (measurable signs in the body) for early detection, diagnosis, and tailored treatments for related conditions.
- Explaining why certain diseases (e.g., Alzheimer's or autoimmune disorders) are more common in Down syndrome and how to treat them alongside it.
- Enhancing quality of life for individuals with Down syndrome and their families.
- Coordination and Efficiency: Requires NIH components to coordinate Down syndrome research to avoid duplication, using existing planning offices. Prioritizes new research that builds on, rather than repeats, current efforts.
- Support and Reporting: Provides technical help (guidance and resources) to grant recipients. Mandates biennial (every two years) reports to congressional committees detailing funded research, involved entities, and any real-world evidence (practical data from studies) for clinical use.
Significant Changes to Existing Law
This bill amends Part A of Title IV of the Public Health Service Act (a key federal law governing public health programs) by adding a new section (404P) specifically for Down syndrome research. Previously, such research may have occurred sporadically across NIH institutes without a centralized, dedicated program. The change formalizes a coordinated, ongoing initiative, emphasizing inclusion in clinical trials and lifespan studies, which expands beyond ad-hoc efforts.
Potential Impacts
- On Government Agencies: NIH and HHS will need to allocate resources (potentially requiring new funding appropriations) for program management, grants, and reporting. This could enhance coordination across federal health agencies but may strain budgets if not fully funded.
- On Citizens: Individuals with Down syndrome and their families could benefit from better diagnostics, treatments, and quality-of-life improvements, potentially leading to broader medical advances (e.g., Alzheimer's therapies applicable to the general population). It promotes inclusion in research, addressing historical underrepresentation.
- On International Relations: No direct impacts mentioned; the focus is domestic U.S. health research.
Main Stakeholders Affected
- Individuals with Down Syndrome and Families: Primary beneficiaries through improved health research and support.
- Researchers and Healthcare Providers: Gain opportunities for funding, training, and collaboration on Down syndrome studies.
- Federal Agencies: NIH, HHS, and related institutes must implement and report on the program.
- Advocacy Groups and Congress: Involved in oversight via reports; bipartisan sponsors (e.g., Senators Hickenlooper, Moran, Booker, Mullin) indicate support from disability rights advocates.
Notable Legal, Constitutional, or Political Implications
- Legal: Authorizes federal expenditure on health research under the Public Health Service Act, ensuring accountability through mandatory reporting. It does not create new enforcement mechanisms but relies on existing grant oversight.
- Constitutional: Aligns with Congress's enumerated powers to promote general welfare and regulate interstate commerce (including health research), without raising separation-of-powers concerns.
- Political: The bill's bipartisan introduction and naming after DeOndra Dixon (likely an advocate or notable figure) highlight cross-party commitment to disability research. It could influence future health funding priorities but faces standard legislative hurdles, such as committee review and appropriation of funds.
This summary was generated by AI and may contain inaccuracies. Refer to the official source document for the authoritative text.
Sponsor
Sen. Hickenlooper, John W. [D-CO]
Cosponsors (6)
Sen. Moran, Jerry [R-KS], Sen. Booker, Cory A. [D-NJ], Sen. Mullin, Markwayne [R-OK], Sen. Bennet, Michael F. [D-CO], Sen. Padilla, Alex [D-CA], Sen. Capito, Shelley Moore [R-WV]
Recent Actions
- 2025-05-21: Read twice and referred to the Committee on Health, Education, Labor, and Pensions.
- 2025-05-21: Introduced in Senate
Bill Versions
- DeOndra Dixon INCLUDE Project Act of 2025 — issued 2025-05-21 — PDF (6 pages)