Mississippi will form a seven-member Rare Disease Task Force to study gaps in care access, insurance coverage and funding for people with uncommon conditions, state officials said. Gov. Tate Reeves approved Senate Bill 2474 on April 8 creating the group within the Mississippi Rare Disease Advisory Council.
Under Senate Bill 2474, the task force is to examine access to specialists, treatment options and funding. The panel will advise policymakers and submit annual reports to state leaders, the measure says.
For some families, the need is immediate. Six-year-old Ava Maie of Hancock County was diagnosed in mid-April with retinoblastoma, a rare eye cancer, her mother, Crysta Bacon, said. The family now travels to St. Jude Children’s Research Hospital in Memphis for urgent care and appointments, Bacon said.
Doctors at the University of Mississippi Medical Center said referrals often determine whether patients receive timely diagnoses. “Many of these primary care providers might be unaware or might not see these conditions very often, so there is an important need for education so they can recognize them and refer patients to the proper specialist,” Dr. Paulo Borjas, a metabolic geneticist at UMMC, said. Laura Hendon, a genetic counselor at the center, said some diseases have only a handful of experts nationwide.
Bacon said the family faces transportation, financial and work-related strain. “Being a single parent, I’ve had to let jobs go because of it,” she said. Borjas said Medicaid has helped some patients access testing and evaluations but not all qualify. Hendon said the task force could help connect medical experts, researchers, patients and policymakers who do not always work together. For families like Bacon’s, she said, care currently depends on treatment outside Mississippi and continuing community support at home.
Jon Ross Myers is the executive editor and publisher of the Mississippi News Network, Mississippi's largest digital only media company. He can be reached at editor@tippahnews.com
