NORD supports the ability of rare disease patients to access comprehensive health care services through expanded financial eligibility for Medicaid and CHIP.
What is Medicaid?
Medicaid is a public health insurance program run jointly by federal and state governments that allows enrolled individuals to receive health care services at no or low cost. While the federal government sets broad standards, states design their programs within those guidelines—meaning eligibility (who is covered) and benefits (what is covered) vary state by state.
Why it matters for rare disease patients
According to data from the Centers for Medicare and Medicaid Services (CMS), as of June 2025, Medicaid covers nearly 78 million Americans, making it the largest single source of health care coverage1 in the United States and a critical safety net for many in the rare disease community who need access to comprehensive care.2
What we’re measuring
Income eligibility limits—how much money an individual or family can earn and still qualify for Medicaid coverage. Higher income eligibility limits allow more people to access care.
How we grade states
Higher grades are awarded to states that expand Medicaid eligibility to cover more low-income adults, children, and families.
Critical 2025 update: federal policy changes ahead
The 2025 Federal Budget Reconciliation Act (HR1) will reshape state Medicaid programs in ways that may impact access to care for rare disease patients, including:
Why 2025 data matters
This State Report Card serves as a critical baseline before these changes take effect. NORD will monitor how HR1 implementation affects access to care for rare disease patients.
Understanding Medicaid expansion
Following the passage of the Affordable Care Act (ACA), states gained the option to expand Medicaid eligibility to adults earning up to 138% of the federal poverty level (FPL).
Current status
40 states have expanded Medicaid, while 10 states have not.
Prior to enactment of the ACA in 2010, individuals could qualify for Medicaid coverage only if they belonged to specific eligibility categories—such as children, parents of dependent children, or pregnant women—and if their income and combined assets fell within limits determined by the state. The U.S. Federal Poverty Guidelines, also known as federal poverty levels (FPLs), indicate the minimum annual income an individual or family needs to meet basic necessities and are based on household size and state of residence.
The ACA changed this eligibility framework by removing categorical requirements and establishing a nationwide minimum income eligibility level at 138% FPL (for example, 138% FPL for an individual in 2025 was $21,579).3 This policy is referred to as Medicaid “expansion.”
In 2012, the U.S. Supreme Court ruled that the ACA’s mandatory Medicaid expansion was unconstitutional, leaving the decision to expand Medicaid up to individual states.4 Since that decision, most states have chosen to expand Medicaid to a minimum eligibility level of 138% FPL and provide coverage to childless adults who were previously ineligible. In these states, expansion has increased access to critical health care services for thousands of low-income Americans and enabled many people with rare diseases to obtain vital coverage. As of December 2024, however, ten states have not expanded Medicaid, depriving millions of uninsured or underinsured Americans of access to quality, affordable health care coverage.5
About CHIP (Children’s Health Insurance Program)
CHIP provides health coverage for children in families that earn too much to qualify for Medicaid but cannot afford private insurance.
Like Medicaid, CHIP is a partnership between the federal government and state governments. States may choose to offer CHIP coverage to children whose families earn incomes above Medicaid eligibility levels, and each state sets its own upper income limits. Nationally, the average upper income limit is 255% of the FPL (for example, a family of three at 250% FPL must earn less than $67,957 annually to qualify for CHIP).6 As of July 2025, more than 7 million people, including pregnant women and children, were enrolled in CHIP.7
Data sources & acknowledgements
This analysis relies on data compiled and made publicly available by the Kaiser Family Foundation (KFF), a nonprofit organization providing trusted information on national health issues and state health policy. NORD gratefully acknowledges KFF’s critical work in making state Medicaid data accessible to researchers, advocates, and policymakers.
1. Congressional Research Service. Medicaid: An Overview. February 8, 2023.
2. Centers for Medicare & Medicaid Services. June 2025 Medicaid & CHIP Enrollment Data Highlights. June 2025.
3. U.S. Department of Health and Human Services. HHS Poverty Guidelines for 2024. January 17, 2024.
4. U.S. Supreme Court. National Federation of Independent Business v. Sebelius. June 27, 2012.
5. Kaiser Family Foundation. Status of State Medicaid Expansion Decisions: Interactive Map. Updated November 12, 2024.
6. Kaiser Family Foundation. Medicaid and CHIP Income Eligibility Limits for Children. January 2025.
7. Centers for Medicare & Medicaid Services. June 2025 Medicaid & CHIP Enrollment Data Highlights. June 2025.
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