Endometriosis CARE Act Pushes $50M Annually for Research, Mandates Insurer Data Sharing on Access Barriers

The Endometriosis Coverage, Awareness, Research, and Education Act—or the Endometriosis CARE Act—is a major push to tackle a chronic condition that affects millions of people. This bill establishes a new federal program under the Public Health Service Act, focusing on research, education, and access. The biggest headline here is the money: the bill authorizes $50 million annually for the National Institutes of Health (NIH) between fiscal years 2026 and 2030 specifically for research aimed at improving treatments and developing a cure for endometriosis.

The Search for a Solution Gets a Budget Boost

For anyone living with endometriosis—a condition where tissue similar to the uterine lining grows outside the uterus, causing severe pain and potentially infertility—the current standard of care often feels like a guessing game. This bill recognizes that gap. By directing the NIH to use that $50 million per year to conduct or support data collection and research (Section 3), the legislation aims to move the needle on a condition that currently has no known cure. Think of it as a dedicated, five-year funding runway to finally figure out better ways to manage or eliminate this disease. The bill also requires the NIH to establish an internet clearinghouse to catalog existing research, making it easier for patients and professionals to find reliable information.

Pulling Back the Curtain on Access and Cost

One of the most frustrating parts of dealing with a chronic illness is the fight to get treatment covered. This bill takes a hard look at those roadblocks. It requires the Secretary of Health and Human Services (HHS) to analyze the barriers people face in accessing symptom treatments, including issues like transportation and provider shortages (Section 3). To do this, the Secretary can require group health plans and insurance companies to provide data on coverage and cost-sharing barriers. This means your private insurer might have to report exactly how often they deny or make it difficult to get specific endometriosis treatments, like specialized surgery or certain medications.

This data push extends to public programs, too. State Medicaid (Title XIX) and CHIP (Title XXI) programs may be required to collect and report service data, broken down by demographics, through the Transformed Medicaid Statistical Information System. While this is great for understanding disparities—showing who is getting care and who isn't—it’s going to create new administrative work for state agencies and private insurers. They’ll need to dedicate resources to collect and submit this specific, stratified data, which could be a heavy lift, especially for smaller state programs.

Education and Equity: Closing the Knowledge Gap

Getting a diagnosis for endometriosis can take years, often because providers lack specific training or the public is unaware of the symptoms. The CARE Act tackles this from two angles. First, it authorizes $2 million annually to develop and disseminate public information on awareness, incidence, and the range of medically appropriate treatment options, with a specific focus on underserved and minority groups (Section 3). This means better public campaigns and culturally appropriate resources, including for mental health support, which is critical when dealing with chronic pain.

Second, the bill focuses on the doctors and nurses. It requires the Secretary, working with professional societies, to distribute evidence-based information to healthcare providers on detecting, diagnosing, and providing care for patients (Section 3). This is crucial for improving the quality of care and reducing the time it takes to get a correct diagnosis. Finally, the bill mandates a study by the National Academies of Sciences, Engineering, and Medicine to assess disparities in prevalence, detection, treatment, and outcomes based on factors like race, geography, and insurance status. This $500,000 study aims to deliver concrete recommendations within 24 months, ensuring that the research and policy changes are grounded in equity.