Mississippi establishes rare disease advisory council
Task for first year is to identify unmet needs, research topics
Mississippi Gov. Tate Reeves has signed into law a bill that establishes a rare disease advisory council (RDAC) in the state.
“I was proud to sign Senate Bill 2156 into law,” Reeves said in a press release from the National Organization for Rare Disorders (NORD). “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,”
The RDAC will be made up of patients, caregivers, healthcare providers and researchers, as well as representatives from pharmaceutical and health insurance companies. The goal is to have a diverse group of experts who can provide education and advice to help guide state programs and legislative priorities, with the ultimate aim of improving life for people in Mississippi who live with rare diseases such as AADC deficiency.
In its first year, the RDAC will be tasked with developing a study to identify unmet needs in Mississippi and collecting research topics from the public to help inform prioritization of issues that affect the state’s rare disease community.
Reeves said the newly formed council is “another great tool in our state’s toolbox,” adding, “I look forward to seeing its positive impact on Mississippians.”
The bill that created the RDAC was championed in the state’s legislature by state Rep. Jay McKnight and Sen. Kevin Blackwell.
A struggle to find providers
“It has been my pleasure to lead the Mississippi Rare Disease Advisory Council bill for the last several years in the House,” McKnight said. “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,” which is to “give Mississippi’s rare community a voice,” he said. “Today, we are doing that by finally seeing the RDAC bill go into law,” he said.
The creation of Mississippi’s RDAC was championed by NORD, an organization that advocates for people affected by rare diseases.
“An estimated one 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, NORD’s vice president of policy. “NORD is thrilled to see Mississippi join the growing number of states looking to support their rare disease community” and is “thankful” to McKnight and Blackwell for their efforts, she said.
“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,” Blackwell said.
NORD also praised an ongoing effort in Mississippi’s legislature that could expand access to Medicaid — the government-funded program that provides health insurance to low-income people — to people working low-income jobs who don’t have health insurance through their work. This type of expansion was made possible at the federal level in 2010 under President Barack Obama, but states have to opt in to expand their programs. So far, Mississippi is one of 10 that haven’t done so.
If that measure is passed, it could expand health insurance coverage to tens of thousands of people in one of the poorest states.
“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.”
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