Louisville, KY, May 3, 2023 — A Louisville infant who was born with a rare genetic disorder, is at home and progressing after a team of healthcare professionals and case managers work to get him access to a life-altering drug.
Oliver Weatherington, who was born on Jan. 10, 2023, was diagnosed invitro with Spinal Muscular Atrophy (SMA). SMA is a genetic disease which affects the central and peripheral nervous system and voluntary muscle movement. It is the most common genetic cause of death in infants and affects approximately one out of every 10,000 people.
“To find out he was diagnosed with a rare disease not knowing his outcome or his mobility down the line, was very concerning for me,” said Katie Weatherington, Oliver’s mother.
Oliver was prescribed Zolgensma, a one-time intravenous infusion for the treatment of SMA. The drug is most effective the earlier it is administered. Initially, Oliver’s genetic markers did not meet Kentucky Department of Medicaid’s criteria and he was not qualified to receive the infusion.
“When I first found out Oliver wasn’t qualified for Zolgensma, I was devastated,” said Katie Weatherington. “I thought that my little boy was going to be up and running around and this was going to be lifechanging for him. It definitely affected our life.”
Oliver’s doctors and WellCare’s Director of Pharmacy Ayonna Tolbert agreed that his prognosis relied heavily on his receiving the infusion. Over a two-week period, a team of doctors, nurses, and WellCare employees worked to gather evidence to support the approval of the drug.
“I was working with our pharmacy department and his provider to make sure everyone was on the same page to try to get this drug to him as fast as possible,” said Allyson Clinkenbeard, the WellCare Care Manager assigned to Oliver’s case.
Zolgensma was approved by the Federal Drug Administration (FDA) in 2019. Since then, more than 1,800 patients worldwide have received the treatment. Oliver’s one-time infusion cost $2.3 million.
“That cost, of course, is unattainable for the average family,” Clinkenbeard said. “I’m proud to work for a company that focuses on the needs of our members and is willing to what it takes to help them improve their lives.”
When presented with additional research, the state approved the drug and Oliver received the infusion on Feb. 10.
"Oliver and I are super thankful WellCare and everyone who went to bat for him to get him the treatment he needed. We just couldn’t have done it without you guys,” said Katie.
Oliver is now five months old, is at home and progressing age-appropriately. He has shown no signs of the disorder, and according to Katie, is “super strong.”
WellCare of Kentucky provides government-sponsored managed care services to families, children, seniors, and individuals with complex needs primarily through Medicaid, Medicare Advantage, and Medicare Prescription Drug Plans across the state. WellCare is a wholly-owned subsidiary of Centene Corporation, a leading healthcare enterprise committed to helping people live healthier lives.