Endometriosis CARE Act
The bill creates a federal program to expand endometriosis research, education, and access, including data collection, disparities study, and patient/provider resources.
The bill creates a federal program to expand endometriosis research, education, and access, including data collection, disparities study, and patient/provider resources.
The Endometriosis CARE Act seeks to:
- Expand federal efforts to understand endometriosis, improve treatment options, and pursue a potential cure.
- Improve public awareness and education about endometriosis, with attention to underserved communities.
- Support health care providers with information and resources to improve diagnosis and care.
- Identify and address barriers to accessing endometriosis treatments, including insurance coverage and access challenges.
- Stimulate an independent assessment of endometriosis disparities through the National Academies, informing policy actions.
1) Endometriosis Data Collection, Surveillance, and Research
- Creates new Sec. 486C under the Public Health Service Act.
- The NIH Director shall conduct or support data collection, surveillance, and research on endometriosis.
- Funding authorization: $50 million per fiscal year for 2026–2030.
- Authorized uses include:
- Research to improve treatments and pursue a cure.
- Establishing or expanding an internet clearinghouse to catalog existing research, treatments, and information for patients and professionals.
- Other related activities as determined by the Director.
2) Identifying Barriers to Accessing Treatments
- The Secretary shall analyze barriers to accessing endometriosis treatments, including:
- Transportation and healthcare professional shortages.
- Data from Medicaid/CHIP (Title XIX/XXI) and private insurance plans to assess coverage gaps and cost-sharing.
- Data collection from group health plans or issuers and state Medicaid/CHIP programs, disaggregated by demographic characteristics.
- Privacy protections must be observed.
- Deliverables: A report to Congress and public posting within 2 years of enactment.
3) Education and Dissemination of Information
- Establishment of an Endometriosis Public Education Program:
- Focus areas include awareness, incidence/prevalence (with emphasis on racial/ethnic minority and underserved groups), mental health support, and treatment options.
- Dissemination: Information may be shared directly or via partnerships with federal programs, nonprofit groups, higher education institutions, and public-private collaborations.
- Authorization of appropriations: $2 million per fiscal year (FY 2026–2030).
4) Information to Health Care Providers
- The Secretary, in collaboration with professional societies, shall disseminate information to promote evidence-based care for endometriosis, covering:
- Detection and diagnosis
- Patient care and communication
- Related topics
- Authorization of appropriations: $2 million per fiscal year (FY 2026–2030).
5) Endometriosis Disparities Study Through the National Academies
- The Secretary shall seek an agreement with the National Academies within 90 days of enactment to study disparities in endometriosis care.
- Study scope includes disparities by race, ethnicity, geography, primary language, sexual orientation, gender identity, disability status, and insurance status.
- The National Academies will make recommendations to Congress, federal agencies, healthcare professionals, and other stakeholders.
- Deliverable: A public report not later than 24 months after enactment.
- Authorization of appropriations: $500,000.
Compiled from official sources — confirm details with the bill’s official record.
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