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Smith-Lemli-Opitz Syndrome

Mississippi signs bill to improve access to care for residents with rare diseases

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The National Organization for Rare Disorders (NORD) launched Project Rare Disease Advisory Council (RDAC) in 2020. Recently, Mississippi became the twenty-eighth state to establish an RDAC, with the governor signing a new bill to improve access for people with rare diseases.

“An estimated 1 in 10 Americans is living with a rare disease, but many patients struggle to find knowledgeable healthcare providers with relevant expertise and access to necessary care and treatment for their complex condition,” said Heidi Ross, Vice President of Policy and Regulatory Affairs at NORD. “NORD is thrilled to see Mississippi join the growing number of states looking to support their rare disease community by establishing an RDAC, and we are so thankful to bill champions Representative Jay McKnight and Senator Kevin Blackwell for their efforts to create an RDAC in Mississippi.”

Governor Tate Reeves signed SB 2156, which established the RDAC that will comprise patients, caregivers, healthcare providers, researchers, and members of the pharmaceutical and insurance companies. The committee will offer guidance on the complex medical needs of those with rare diseases and make policy recommendations to improve access and opportunities for the rare disease community. In the first year, the committee will assess this population’s unmet needs and determine research areas to address the issues impacting the state’s rare disease community.

The committee will seek to address policies that may interrupt healthcare coverage, access, and affordability, including time to diagnosis through newborn screening, limitations on Medicaid enrollment, inadequate state-regulated insurance, and high out-of-pocket prescription drug costs.

Reference

Mississippi Enacts Critical Reform to Improve Access to Care for the 1 in 10 State Residents Living with a Rare Disease. National Organization for Rare Disorders press release. April 16, 2024. Accessed May 3, 2024. https://rarediseases.org/mississippi-enacts-critical-reform-to-improve-access-to-care-for-the-1-in-10-state-residents-living-with-a-rare-disease/

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