Mississippi Enacts Critical Reform to Improve Access to Care for the 1 in 10 State Residents Living with a Rare Disease

Since NORD launched Project RDAC in 2020, Mississippi becomes the 28th state to establish an RDAC to better focus public policy efforts for people living with rare diseases

JACKSON, Miss., April 16, 2024 /PRNewswire/ -- Today, patients and families in Mississippi's rare disease community celebrated Governor Tate Reeves' signing of SB 2156, which officially establishes a Rare Disease Advisory Council (RDAC) in the state of Mississippi.

"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," said Heidi Ross, Vice President of Policy and Regulatory Affairs at the National Organization for Rare Disorders. "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." 

The RDAC will comprise of a diverse group of rare disease stakeholders including patients, caregivers, healthcare providers, researchers, and members of pharmaceutical and health insurance companies. Their expertise will be an asset to the entire state, creating a platform to educate the public, state agencies, healthcare providers, and the Legislature about the complex medical needs of those with rare diseases and to make policy recommendations that improve rare disease patient access to critical health care services. In year one, the RDAC will develop a landscape study on the unmet needs in Mississippi and collect research topic areas from the public to help inform the prioritization of issues impacting Mississippi's rare disease community. 

"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."

"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," stated Representative McKnight.

Senator Blackwell added, "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."

Aaron Blocker, a patient living with a rare disease in Mississippi said, "The establishment of the Rare Disease Advisory Council in Mississippi stands as a monumental victory for patients like myself across our state. This pivotal legislation signals a profound commitment to addressing the unique needs and challenges faced by those of us battling rare diseases, offering hope and support to individuals and families."

"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," said Carolyn Sheridan, State Policy Manager at NORD. "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."

With the formation of the Mississippi RDAC, the state will be well-positioned to tackle issues most critical to people living with rare disease, including improving policies that can jeopardize health care coverage, access, and affordability for rare disease patients, including time to diagnosis through newborn screening, limitations on Medicaid enrollment, inadequate state-regulated insurance, and failure to protect against high out-of-pocket prescription drug costs.

About the National Organization for Rare Disorders (NORD) 
With a more than 40-year history of advancing care, treatments and policy, the National Organization for Rare Disorders (NORD) is the leading and longest-standing patient advocacy group for the more than 30 million Americans living with a rare disease. An independent 501(c)(3) nonprofit, NORD is dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 340 patient organization members, is committed to improving the health and well-being of people with rare diseases by driving advances in care, research and policy. For more information, visit rarediseases.org.

NORD established Project RDAC in 2020 to increase the number of Rare Disease Advisory Councils across the country and help optimize existing councils. For more information on Project RDAC, visit rarediseases.org/rare-disease-advisory-councils. To learn more about NORD's policy work, visit rarediseases.org/driving-policy/. 

NORD encourages any individuals looking to get involved in rare disease advocacy to join the NORD Rare Action Network today.

Rare disease facts can be found here: https://rarediseases.org/wp-content/uploads/2024/04/Rare-Disease-Fact-Sheet.pdf.

SOURCE National Organization for Rare Disorders (NORD)