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 the authority to tailor their Medicaid programs, while controlling health care costs and improving services for enrollees. Unfortunately, some states are using Section 1115 waivers to restructure Medicaid benefits and eligibility in ways that undermine the purpose of the program and could cause further harm to people with rare diseases.
Concerning trends in Section 1115 waivers
Medicaid continually exists as a vital 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 intent 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 restrict or remove benefits, eliminate retroactive eligibility (when Medicaid retroactively pays for medical and personal care expenses prior to applying for Medicaid), 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.1 However, in 2022, the United States District Court for the Southern District of Georgia reinstated “Georgia Pathways,” a Section 1115 waiver that includes a work requirement.2 The Biden administration declined to appeal this court ruling, and as a result, Georgia is currently the only state in the nation with currently with a Medicaid work requirement. While NORD is not reinstating this category within the 10th edition of the State Report Card, we are tracking the issue closely and will continue to do so. 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 also for people in other states who may be impacted by similar proposals in the future.
Acknowledgement for states with proactive Section 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. Additionally, starting January 1, 2024, all states are required to provide 12 months of continuous coverage for children in Medicaid and CHIP3, which will ensure more reliable access to quality, affordable health care for children and work toward reducing health disparities.
1. Cameron, Chris. (2021, December 23). Biden Administration Rejects Medicaid Work Requirements in Georgia. Retrieved November 28, 2023, from https://www.nytimes.com/2021/12/23/us/politics/medicaid-work-requirements-georgia-biden.html
2. Whitehead, S.& Miller, A. (2022, November 18). Path cleared for Georgia to launch work requirements for Medicaid. Kaiser Health News. Retrieved December 5, 2022, from https://khn.org/news/article/georgia-medicaid-pathways-kemp/
3. HHS Takes Action to Provide 12 Months of Mandatory Continuous Coverage for Children in Medicaid and CHIP. (2023, September 29). US Department of Health and Human Services. https://www.hhs.gov/about/news/2023/09/29/hhs-takes-action-provide-12-months-mandatory-continuous-coverage-children-medicaid-chip.html
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