Eight-year-old Sawyer Clark loves being active in the outdoors.
“He loves adventure,” Brandi Clark, his mom, said. “He has a huge imagination.”
Clark was diagnosed with spinal muscular atrophy, also known as SMA, when he was a baby. His pediatrician said he had low muscle tone and since his diagnosis, therapy and doctor visits multiple times a week have become routine. The debilitating disease affects part of the nervous system, which leads to muscle weakness and often a loss of motor movement.
“He can’t run, jump or kick a ball without having to hang onto something,” Brandi said.
She’s become her son’s lead advocate, trying to get him the care he needs. In 2017, that included a fight with insurance to continue Clark’s physical therapy treatments. That’s why when Clark’s insurance plan with Blue Cross Blue Shield of Texas under STAR Kids approved full coverage of Spinraza, she was shocked. STAR Kids is Texas’ Medicaid-managed care plan that helps children and young adults under 21 who have disabilities.
“It was a sigh of relief because I was bracing myself for them to say no,” Brandi said. “That happens a lot with insurance, so you have to appeal things.”
Spinraza was approved by the U.S. Food and Drug Administration in late 2016. It’s the first-ever approved treatment for SMA. However, cost remains a concern for a lot of families seeking the treatment. Each dosage costs $125,000.
In a statement, Blue Cross Blue Shield of Texas said its medical team “collaborates with physicians and researchers to periodically review the benefits and risks of various medical treatments to produce the best quality, cost-effective outcomes.”
So far, Clark has received four injections. Brandi says his energy levels have increased since he started the treatment.
“He’s able to lift his legs up higher,” she said. “He is able to help you with standing from a seated position.”
Texas lawmakers have been holding several meetings at the State Capitol to evaluate and get feedback about the state’s Medicaid managed care system. Most recently, legislators discussed recommendations with leaders of the Texas Health and Human Services Commission.
“That we look at a process where if a provider or somebody has a complaint – I don’t care if you call it a complaint or a concern, whatever we want to call it – but we need to make sure when they get in touch with a managed care organization, [Texas Health and Human Services Commission] gets a copy of it and in my opinion, I’d like the Office of the Inspector General to get a copy of it,” State Rep. Richard Raymond, D-Laredo, said.
Commissioner Charles Smith told the committee his agency wants “to continue to stress the quality and focus on outcomes.” Medicaid Director Stephanie Muth said the agency’s relationship with the managed care organizations is a “partnership, but with accountability.”
The commission recommends seeking feedback from patients and providers as it crafts service delivery models.
The Texas House Committee on Human Services meets again in May and will hear updates on patient and provider satisfaction about Medicaid managed care.