Spinraza (Nusinersen) Treatment for Spinal Muscular Atrophy

Spinraza is the brand name for nusinersen, a drug that was approved by the Federal Drug Administration (FDA) on December 23, 2016. It is used for the treatment of spinal muscular atrophy (SMA) in pediatric and adult patients. Children’s of Alabama began SMA treatments with Nusinersen in June of 2017.

Spinraza frequently asked questions:

Is my child eligible for Spinraza treatment? According to hospital protocol and FDA regulation, your child must have the survival motor neuron 1 (SMN1) genetic mutations that causes SMA. Prior to starting therapy, this much be confirmed with genetic testing results.

According to the FDA, patients of all ages with all times of SMA (1,2,3, and adult onset 4) are eligible. At Children’s of Alabama we are currently dosing pediatric patients only with the exception of young adults with previously established care at our center. New patient referrals for pediatric patients only. 

How is Spinraza given to patients? Spinraza is given as an intrathecal injection or spinal fluid injection by doing a lumbar puncture or spinal tap. Anesthesia and medication delivery is individualized based on patient need and medical issues. At Children’s of Alabama all procedures are currently being done in our Interventional Radiology Department. At the start of treatment, four doses are given in the first two months, and then every four months to continue. Spinraza injections are a lifelong therapy for patients with SMA. 

Will my child’s insurance cover Spinraza treatment? In Alabama, insurance coverage varies based on your plan. We recommend talking to your insurance provider as well as our medical team to determine the best course of action. We work with each insurance provider and family to obtain prior authorization before Spinraza can be administered. Along with the Spinraza dose, patients and families could incur costs from routine assessment, laboratory testing, anesthesia, and the injection procedure. Children’s of Alabama is not currently accepting out-of-state Medicaid coverage for Spinraza patients. 

How do I get this treatment started for my child? All patients interested in Spinraza must have established and ongoing care here at Children’s of Alabama. Our team will work with each family through the prior authorization process prior to scheduling your child for their first injection. For questions or interest regarding Spinraza please call our MDA Care Center Coordinator, Shelley Coskery, at 205-638-2007. 

For additional information, please visit Biogen’s official website www.spinraza.com.