Mississippi Establishes Rare Disease Advisory Council

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Mississippi governor Tate Reeve’s signed bill SB 2156, which officially formed the state’s first Rare Disease Advisory Council (RDAC). The state is the 28th in the country to form an RDAC, largely due to the efforts of the National Organization for Rare Disorders (NORD).

In a press release, Governor Reeves said, “"I was proud to sign Senate Bill 2156 into law," said Mississippi Governor Tate Reeves. "Our state remains committed to supporting those living with a rare disease, and The Mississippi Rare Disease Advisory Council will help to accomplish exactly that. It's another great tool in our state's toolbox, and I look forward to seeing its positive impact on Mississippians."

The RDAC will help the advise state officials with issues related to improving policies, ensuring citizens of the state have access to proper coverage, limitations on Medicaid enrollment, and protection against high out-of-pocket prescription drug costs. People living with rare diseases often face these sorts of issues, and NORD is hoping that by establishing RDACs across the country, more people will be better positioned to deal with their conditions.

Heidi Ross, vice president of policy and regulatory affairs at NORD, said in a press release, “An estimated 1 in 10 Americans is living with a rare disease, but many patients struggle to find knowledgeable health care providers with relevant expertise and access to necessary care and treatment for their complex condition. NORD is thrilled to see Mississippi join the growing number of states looking to support their rare disease community by establishing a Rare Disease Advisory Council and we are so thankful to bill champions Representative Jay McKnight and Senator Kevin Blackwell for their efforts to create an RDAC in Mississippi."

Mississippi representative McKnight added, “It has been my pleasure to lead the Mississippi Rare Disease Advisory Council bill for the last several years in the House. I have received an innumerable number of calls and messages from my own constituents and individuals all over the state on this issue and they all have the same ask; give Mississippi's rare community a voice. Today, we are doing that by finally seeing the RDAC bill go into law.”

In 2020, NORD established a project focused on establishing these sorts of advisory councils across the country. Project RDAC also works with the states in order to optimize the councils as they’re formed.

NORD’s state policy manager Carolyn Sheridan discussed some of the progress NORD has made in Mississippi. She said, “We are seeing encouraging moves in the Mississippi legislature to improve access to care and medical treatment for Mississippians living with rare disease, including an opportunity right now to expand Medicaid. We look forward to working with our Rare Action Network advocates and volunteers to continue to highlight and advance critical priorities and build on our momentum."

Senator Kevin Blackwell, who helped get the bill passed, also discussed the RDAC, saying, “I'm proud to see Mississippi's Rare Disease Advisory Council become law. I take the responsibility of leading efforts for health care reform in the Senate seriously, and I promised to address the health, financial, economic and educational challenges in a commonsense way. With over 30 years of experience in the healthcare industry, I know how unique the rare disease patient and caregiver experience is and convening a body of experts on these complex issues to develop solutions together is just good business."

Source

1. 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 (NORD). April 16, 2024. https://www.prnewswire.com/news-releases/mississippi-enacts-critical-reform-to-improve-access-to-care-for-the-1-in-10-state-residents-living-with-a-rare-disease-302118797.html