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Protecting Patients in State Medicaid Programs

NORD supports the ability of eligible rare disease patients to access comprehensive Medicaid services in their states without unnecessary and harmful barriers.

Section 1115 of the Social Security Act grants the Secretary of Health and Human Services (HHS) the authority to approve variations to state Medicaid programs that promote the objectives of the Medicaid program, which is “to serve the health and wellness needs of our nation’s vulnerable and low-income individuals and families.” Through Section 1115 waivers, states are able to tailor their Medicaid programs while controlling health care costs and improving services for beneficiaries. Unfortunately, some states have used Section 1115 waivers to restructure Medicaid benefits and eligibility in ways that undermine the purpose of the program and could cause harm to people with rare diseases.

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Concerning Trends in Section 1115 Waivers

Medicaid exists to be a safety net for those who cannot afford or access other forms of health care coverage. By definition, people who qualify for Medicaid have low incomes, and are among our nation’s most vulnerable populations. Substantially altering the program in ways that reduce benefits for people in need is not only contrary to the goals of the Medicaid program, but it could also worsen health outcomes and put health care out of reach for rare disease patients and their caregivers. NORD opposes state efforts to use Section 1115 waivers to restrict access to health care, or to shift additional costs onto patients.

Harmful changes to state Medicaid programs through the use of 1115 waivers tracked in this edition of the State Report Card include when states have eliminated retroactive eligibility, restricted or removed benefits, and alterations in funding that could severely limit the number of individuals capable of accessing Medicaid coverage.

Significant Changes

NORD has made two significant changes to our grading methodology in this edition of the report card. First, we are now only grading states based on approved and implemented 1115 demonstrations. We will not issue grades based upon pending or proposed waivers.

Second, in previous editions of the State Report Card, NORD issued failing grades to states that used Section 1115 waivers to establish work requirements in state Medicaid programs. However, in the spring and summer of 2021, the Centers for Medicare and Medicaid Services (CMS) notified all states with approved work requirement waivers of its final decision to withdraw those authorities. Therefore, no state is currently implementing a Medicaid work requirement and as a result, NORD has removed that section from the latest edition of the State Report Card.


Grading Methodology

Given the complexities and differences amongst state Medicaid programs and the significant harm posed by many of the proposed policies, this report grades each state’s 1115 waiver activity on a “Pass” or “Fail” basis. If a state has approved and is currently implementing a waiver that contains policies capable of harming the rare disease community, it received a failing grade. All other states received a passing grade. More information regarding the details of Section 1115 waivers within each state can be found in the appendices.