To amend the Public Health Service Act to provide for greater investments in research on rare diseases and conditions disproportionately affecting minority populations, and for other purposes.
Analysis under review: This bill has generated analysis that may be too generic or incomplete. Clause-level evidence remains available below.
Summary
What This Bill Does
The bill establishes NIH rare diseases health equity research coordination by creating a new section 409K in the Public Health Service Act, requires codifies section 409K requiring NIH to expand rare diseases health equity research, establish a Coordinating Committee, and requires NIH directors to develop a comprehensive federal plan within 180 days to address rare diseases in minority populations. It relies on grants, reporting requirements, compliance mandates, and appropriations. The main policy areas are Healthcare, Education, Science & Space, and Trade.
Who Benefits and How
Tribal Epidemiology Centers could gain revenue opportunities, Medical and nursing schools could gain revenue opportunities, and Medical students could see lower costs.
Who Bears the Burden and How
CDC would take on compliance duties, HHS would take on compliance duties, and National Institutes of Health (NIH) would take on compliance duties.
Key Provisions
- Establishes NIH rare diseases health equity research coordination by creating a new section 409K in the Public Health Service Act.
- Requires codifies section 409K requiring NIH to expand rare diseases health equity research, establish a Coordinating Committee.
- Requires NIH directors to develop a comprehensive federal plan within 180 days to address rare diseases in minority populations.
- Creates codifies section 464z-7 mandating NIH collaborative plan development for rare diseases in minority populations.
- Establishes CDC-coordinated grants to nonprofits for collecting epidemiological data on rare diseases in minority populations.
Evidence Chain:
This summary is generated from the full bill text using AI analysis. Expand "Detailed Analysis" below for identified beneficiaries/burden bearers with clause-level evidence links.
At a Glance
What This Bill Does
The bill establishes NIH rare diseases health equity research coordination by creating a new section 409K in the Public Health Service Act, requires codifies section 409K requiring NIH to expand rare diseases health equity research, establish a Coordinating Committee, and requires NIH directors to develop a comprehensive federal plan within 180 days to address rare diseases in minority populations.
Key Policy Areas
Healthcare, Education, Science & Space, Trade
Primary Purpose
The bill establishes NIH rare diseases health equity research coordination by creating a new section 409K in the Public Health Service Act, requires codifies section 409K requiring NIH to expand rare diseases health equity research, establish a Coordinating Committee, and requires NIH directors to develop a comprehensive federal plan within 180 days to address rare diseases in minority populations.
Policy Domains
Section 1 - Short Title
Identified Gains
- Tribal Epidemiology Centers
- Medical and nursing schools
- Medical students
- Tribal and Urban Indian Health Centers
- Public and private nonprofit entities
Identified Costs
- CDC
- HHS
- National Institutes of Health (NIH)
- NIH national research institutes
- NIH Directors
Legislative Progress
IntroducedMs. Strickland introduced the following bill; which was referred to …
Stakeholder Effects
cui bono?How this legislation distributes effects. Mention counts reflect frequency, not effect magnitude.
Accredited medical and nursing schools, Medical and nursing schools, Medical schools
Biomedical research institutions, Minority researchers, Tribal Epidemiology Centers
Medical students, Medical students and physicians
Public and nonprofit private entities, Public and private nonprofit entities
Tribal and Urban Indian Health Centers, Tribal healthcare entities
Physicians serving rare disease patients
Bill Structure & Actor Mappings
Who is "The Secretary" in each section?
- "the_director"
- → Director of NIH
- "the_secretary"
- → Secretary of Health and Human Services
- "the_coordinating_committee"
- → Rare Diseases Health Equity Coordinating Committee
- "ncats"
- → National Center for Advancing Translational Sciences
- "nhlbi"
- → National Heart, Lung, and Blood Institute
- "the_director"
- → Director of NIH
- "the_institute"
- → National Institute on Minority Health and Health Disparities
- "the_director"
- → Director of the Centers for Disease Control and Prevention
- "grant_recipients"
- → Public and private nonprofit entities
- "the_secretary"
- → Secretary of Health and Human Services
- "grant_recipients"
- → Accredited schools of medicine, nursing, and health professional training programs
- "the_administrator"
- → Administrator of the Health Resources and Services Administration
Key Definitions
Terms defined in this bill
Has the meaning given such term in section 464z-3 of the Public Health Service Act
Has the meaning given such term in section 526 of the Federal Food, Drug, and Cosmetic Act (21 U.S.C. 360bb)
We use a combination of our own taxonomy and classification in addition to large language models to assess meaning and potential beneficiaries. High confidence means strong textual evidence. Always verify with the original bill text.
Learn more about our methodology