Endometriosis CARE Act
- Sponsor
- Rep. Williams, Nikema [D-GA-5]
- Committees
- Energy and Commerce Committee (primary)
- Last action
- Dec 11, 2025
Bottom line
This bill aims to bolster federal efforts in endometriosis research, awareness, and patient support through new funding, mandated studies, and improved data collection to address a chronic and often debilitating condition.
What it actually does
The Endometriosis CARE Act establishes new programs within the Department of Health and Human Services (HHS) to significantly advance research, improve data collection, and enhance public and professional awareness regarding endometriosis. It mandates an analysis of barriers to treatment access and a study by the National Academies on health disparities related to the disease, authorizing substantial appropriations for these initiatives.
Proponents argue
Proponents argue that the bill addresses a long-neglected chronic disease affecting millions, providing much-needed funding for research into causes and cures, improving access to treatment, and raising public and professional awareness to reduce diagnostic delays and improve patient outcomes. They emphasize the severe pain and fertility issues caused by endometriosis and the current lack of effective solutions.
Opponents contend
No organized opposition is typically raised against bills focused on medical research and public health awareness for specific diseases, especially those with broad impact and no immediate controversial elements. Potential concerns, if any, might revolve around the allocation of federal funds to specific diseases versus broader health initiatives, or the administrative burden of new data collection requirements, but these are not explicitly stated in the provided context.
The bill is short and clearly structured, making it accessible for a quick but comprehensive review.
Section 3(a), adding Section 486C(a) to the Public Health Service Act
Advancing Endometriosis Data Collection, Surveillance, and Research
This provision directs the Director of the National Institutes of Health (NIH) to conduct or support data collection, surveillance, and research related to endometriosis. It specifically authorizes funding for research to improve treatment options and develop a cure, and for establishing or expanding an internet clearinghouse to catalog existing research and treatment information for patients and healthcare professionals.
Supporters argue
Supporters argue that increased federal investment in research is crucial for understanding the disease, developing effective treatments, and ultimately finding a cure, which is currently lacking. The clearinghouse will centralize knowledge for patients and providers.
Critics contend
No specific opposition is typically raised against this provision, as medical research funding for chronic diseases is generally supported.
Tradeoffs
Balancing research priorities across various diseases within limited federal budgets.
Section 3(b), adding Section 486C(b) to the Public Health Service Act
Identifying Barriers to Accessing Treatments for Endometriosis Symptoms
This provision mandates the Secretary of HHS to conduct an analysis of barriers faced by individuals with endometriosis in accessing treatments, including transportation issues and healthcare professional shortages. It allows for the assessment of data from State Medicaid programs, Children's Health Insurance Programs (CHIP), and private health plans, and can require these entities to provide necessary information. A report on the analysis must be submitted to Congress and made publicly available within two years.
Section 3(c), adding Section 486C(c) to the Public Health Service Act
Endometriosis Public Education Program
This provision directs the Secretary of HHS to develop and disseminate public information regarding endometriosis. The information will cover awareness, incidence, prevalence, mental health impacts, and treatment options, with a particular focus on individuals from racial and ethnic minority groups and other underserved populations, ensuring culturally and linguistically appropriate support.
Section 3(d), adding Section 486C(d) to the Public Health Service Act
Information to Health Care Providers
This provision requires the Secretary of HHS, in consultation with relevant healthcare professional societies, to disseminate information to healthcare professionals, organizations, and health systems. The goal is to promote evidence-based care for individuals with endometriosis, including guidance on detecting and diagnosing the condition, providing care, and communicating effectively with patients.
Section 3(e), adding Section 486C(e) to the Public Health Service Act
Endometriosis Disparities Study Through National Academies
This provision directs the Secretary of HHS to enter an agreement with the National Academies of Sciences, Engineering, and Medicine to conduct a study on endometriosis disparities. The study must assess disparities in prevalence, detection, treatment, and outcomes based on various demographic factors such as race, ethnicity, geography, primary language, sexual orientation, gender identity, disability status, and insurance status. The National Academies are required to report their findings and recommendations to Congress within 24 months.