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Policy Issues

  • NORD RDAC Icon Language photo. Medicaid Financial Eligibility
  • NORD RDAC Icon Language logo image. Medical Nutrition
  • NORD RDAC Icon Language logo image. Newborn Screening
  • NORD RDAC Icon Language logo design. Prescription Drug
    Out-of-Pocket Costs
  • NORD RDAC Icon Language logo design. Protecting Patients in
    State Medicaid Programs
  • NORD RDAC Icon Language logo image. Protecting Patients in
    State-Regulated Insurance
  • NORD RDAC Icon Language logo design. Rare Disease Advisory Councils
  • NORD RDAC Icon Language logo image. Step Therapy (Fail First)
  • NORD RDAC Icon Language logo image. Telehealth
  • Policy Statements
  • Appendices

Medicaid Financial Eligibility

NORD supports the ability of rare disease patients to access comprehensive health care services through expanded financial eligibility for Medicaid and CHIP.

Medicaid is an entitlement program administered through a partnership between the federal government and state governments, in which individuals who meet certain criteria are given access to no-cost or low-cost health care services. Each state has a significant role in shaping its own Medicaid program, resulting in considerable differences in program eligibility and benefits from state to state.

Medicaid plays an important role in supporting the rare disease community, as many individuals with rare diseases depend on Medicaid for primary or supplemental health care coverage. As of July 2024, Medicaid covers nearly 80 million Americans, making it the largest single-source provider of health care coverage1 in the United States and a critical safety net for its enrollees.2

 

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Medicaid financial eligibility

Prior to the enactment of the Affordable Care Act (ACA) in 2010, U.S. citizens could be eligible for Medicaid coverage in the state where they live if they belonged to a specific category (e.g., children, parents of dependent children, pregnant women, etc.) and if their income and combined assets fell within a range determined by the state. The U.S. Federal Poverty Guidelines are “poverty lines” that indicate the minimum amount of annual income that an individual/family needs to pay for necessities. These guidelines, also called federal poverty levels (FPLs), are based on the size of a household and the state in which one resides. The ACA changed the eligibility standard by removing the specific categories and establishing a nationwide minimum income eligibility level at 138% FPL (e.g., 138% FPL for an individual in 2024 was $20,783)3 for all states operating Medicaid programs. This policy is referred to as Medicaid “expansion.”

In 2012, however, the Supreme Court found the ACA’s establishment of a national minimum income eligibility level to be unconstitutional, leaving the decision of whether 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 Medicaid coverage for childless adults who had been ineligible for coverage before the passage of the ACA. In these states, expansion has resulted in access to critical health care services for thousands of low-income Americans and allowed many people with rare diseases to obtain vital health care coverage. Unfortunately, as of December 2024, 10 states have not opted to expand Medicaid, depriving millions of uninsured or underinsured Americans of access to quality, affordable health care coverage.5

Children’s Health Insurance Program (CHIP) financial eligibility

Like Medicaid, CHIP is a partnership between the federal government and state governments where states can opt to provide health care coverage for children whose families earn incomes above current Medicaid eligibility levels. Each state determines its upper income limits for CHIP eligibility, which varies state to state. However, the national average of the upper income limit is 255% of the FPL (e.g. a family of three at 250% of FPL must make less than $63,200 annually to qualify for CHIP).6 As of July 2024, more than 7 million children were enrolled in CHIP.7


1. July 2024 Medicaid & CHIP Enrollment Data Highlights. (2024, July.). Centers for Medicare & Medicaid Services https://www.medicaid.gov/medicaid/program-information/medicaid-and-chip-enrollment-data/report-highlights/index.html

2. Medicaid: An Overview. (2023, Feb 8). Congressional Research Service. https://crsreports.congress.gov/product/pdf/R/R43357

3. HHS Poverty Guidelines for 2024. (2024, Jan 17). Department of Health and Human Services. https://aspe.hhs.gov/topics/poverty-economic-mobility/poverty-guidelines

4. National Federation of Independent Business, et al. v. Sebelius, Secretary of Health and Human Services, et al. (2012, Jun 27). Legal Information Institute. https://www.law.cornell.edu/wex/national_federation_of_independent_business_v._sebelius_(2012)

5. Status of State Medicaid Expansion Decisions: Interactive Map. (2024, Nov. 12). KFF. https://www.kff.org/medicaid/issue-brief/status-of-state-medicaid-expansion-decisions-interactive-map/

6. Medicaid and CHIP Income Eligibility Limits for Children as a Percent of the Federal Poverty Level. (2024, May 1). KFF. https://www.kff.org/health-reform/state-indicator/medicaid-and-chip-income-eligibility-limits-for-children-as-a-percent-of-the-federal-poverty-level/

7. July 2024 Medicaid & CHIP Enrollment Data Highlights. (2024). Centers for Medicare & Medicaid Services. https://www.medicaid.gov/medicaid/program-information/medicaid-and-chip-enrollment-data/report-highlights/index.html

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