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 allows states to request authority 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. 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.
In this edition of the State Report Card, NORD continued to track harmful policies through the use of Section 1115 waivers, such as when states elect to eliminate retroactive eligibility, restrict or remove benefits, and alterations in funding that could severely limit the number of individuals capable of accessing Medicaid coverage.
NORD no longer grades states on whether they have implemented a work requirement for Medicaid beneficiaries. However, in 2022, the United States District Court for the Southern District of Georgia reinstated “Georgia Pathways,” an 1115 waiver that includes a work requirement.1 The federal government has declined to appeal this court ruling, and as a result Georgia will be the only state in the nation with a Medicaid work requirement.2 While NORD is not reinstating this category within the 8th Edition of the State Report Card, we are tracking the issue closely and may decide to include it as part of the rubric in future State Report Cards. Since the state of Georgia already fails NORD’s “Protecting Patients in State Medicaid Programs” category, this ruling does not alter Georgia’s grade. Georgia’s proposal sets an alarming precedent, and NORD is deeply concerned, not only for the Georgians living with a rare disorder who may be harmed by the Georgia Pathways waiver, but for people in other states who may be impacted by similar proposals.
Acknowledgement for States with Proactive 1115 Waiver Policies
While NORD continues to grade this category with a pass/fail methodology, we would like to acknowledge within the Report Card those states that have taken proactive steps to improve the scope and quality of their Medicaid programs. For example, in 2022, 32 states provided 12-month continuous eligibility for all children in Medicaid and/or CHIP, and 4 states provided continuous eligibility for adults.3 These positive, patient-focused proposals will reduce the number of people with Medicaid coverage who lose insurance or become uninsured. NORD is eager to support states in developing Section 1115 waivers that contain these concepts.
Given the complexities and differences amongst state Medicaid programs, the different status of each waiver, and the significant harm posed by many of the proposed policies, this report grades each state’s waiver activity on a “Pass” or “Fail” basis. At the time of this report, if a state sought and is working to implement, or is currently seeking a waiver that contains policies capable of harming the rare disease community, it received a failing grade. All other states received a passing grade.