Ways and Means Committee, Energy and Commerce Committee, Natural Resources Committee
Introduced
In Committee
On Floor
Passed Chamber
Enacted
The Health Equity and Rare Disease Act of 2025, or HEARD Act, seeks to significantly expand and coordinate federal efforts to address rare diseases and conditions that disproportionately affect minority populations. It directs the National Institutes of Health (NIH) to intensify research activities in this area and establish a dedicated Coordinating Committee. This committee, comprising directors from relevant NIH institutes and other federal agencies like the CDC and FDA, will develop a comprehensive plan for research and education, focusing on biomedical, psychosocial, and rehabilitative issues, and identifying research priorities. The bill mandates the NIH Director and other institute leaders to create a collaborative federal plan, including strategies to increase diversity in genetic programs and support basic, clinical, and translational research on early detection, diagnosis, treatment, and quality of life for affected minority populations. It also calls for clinical training programs for healthcare practitioners and guidance to boost minority health professional participation in research. Furthermore, the legislation authorizes grants for public and private nonprofit entities to collect and analyze epidemiological data on rare diseases in minority populations, coupled with outreach and health literacy initiatives. To strengthen the healthcare workforce, the HEARD Act establishes grant programs for medical and nursing schools to train professionals in rare disease care, including through telehealth, and to conduct related research. It also creates a mentoring program for healthcare professionals interested in rare diseases and a scholarship and loan repayment program to incentivize physicians and genetic counselors to serve these populations. Additionally, grants will be available to increase minority representation in rare disease research through recruitment, retention, internships, and mentoring opportunities. The bill requires several reports to Congress, including one from the Secretary of Health and Human Services on federal activities, a comprehensive list of disproportionately impacting rare diseases, and an analysis of data gaps. The FDA is directed to survey its policies to increase clinical trial diversity for rare diseases in minority populations and provide recommendations for improvement. Finally, the Act establishes a grant program for Tribal Epidemiology Centers to support culturally appropriate research in Native American communities and mandates a Medicare review of regulatory barriers affecting access to rare disease treatments for beneficiaries of color.
Get AI-generated questions to help you understand this bill better
Timeline
Introduced in House
Referred to the Committee on Energy and Commerce, and in addition to the Committees on Ways and Means, and Natural Resources, for a period to be subsequently determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned.
Introduced in House
Referred to the Committee on Energy and Commerce, and in addition to the Committees on Ways and Means, and Natural Resources, for a period to be subsequently determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned.
Health
HEARD Act of 2025
USA119th CongressHR-1750| House
| Updated: 2/27/2025
The Health Equity and Rare Disease Act of 2025, or HEARD Act, seeks to significantly expand and coordinate federal efforts to address rare diseases and conditions that disproportionately affect minority populations. It directs the National Institutes of Health (NIH) to intensify research activities in this area and establish a dedicated Coordinating Committee. This committee, comprising directors from relevant NIH institutes and other federal agencies like the CDC and FDA, will develop a comprehensive plan for research and education, focusing on biomedical, psychosocial, and rehabilitative issues, and identifying research priorities. The bill mandates the NIH Director and other institute leaders to create a collaborative federal plan, including strategies to increase diversity in genetic programs and support basic, clinical, and translational research on early detection, diagnosis, treatment, and quality of life for affected minority populations. It also calls for clinical training programs for healthcare practitioners and guidance to boost minority health professional participation in research. Furthermore, the legislation authorizes grants for public and private nonprofit entities to collect and analyze epidemiological data on rare diseases in minority populations, coupled with outreach and health literacy initiatives. To strengthen the healthcare workforce, the HEARD Act establishes grant programs for medical and nursing schools to train professionals in rare disease care, including through telehealth, and to conduct related research. It also creates a mentoring program for healthcare professionals interested in rare diseases and a scholarship and loan repayment program to incentivize physicians and genetic counselors to serve these populations. Additionally, grants will be available to increase minority representation in rare disease research through recruitment, retention, internships, and mentoring opportunities. The bill requires several reports to Congress, including one from the Secretary of Health and Human Services on federal activities, a comprehensive list of disproportionately impacting rare diseases, and an analysis of data gaps. The FDA is directed to survey its policies to increase clinical trial diversity for rare diseases in minority populations and provide recommendations for improvement. Finally, the Act establishes a grant program for Tribal Epidemiology Centers to support culturally appropriate research in Native American communities and mandates a Medicare review of regulatory barriers affecting access to rare disease treatments for beneficiaries of color.
Get AI-generated questions to help you understand this bill better
Timeline
Introduced in House
Referred to the Committee on Energy and Commerce, and in addition to the Committees on Ways and Means, and Natural Resources, for a period to be subsequently determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned.
Introduced in House
Referred to the Committee on Energy and Commerce, and in addition to the Committees on Ways and Means, and Natural Resources, for a period to be subsequently determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned.