A young boy in Morgantown, West Virginia is hoping to start the new FDA-approved treatment for spinal muscular atrophy (SMA). The two-year-old’s family was overjoyed when they found out the FDA had approved Spinraza and immediately sought to find out if they could start their son on the drug.
As reported by wvalways.com, Alexander Johnson and his family were waiting to see if he could begin the treatment they had heard so many good things about. However, since going to press the family announced on Facebook that their insurance company has denied access to Spinraza due to the severity of Alexander’s condition. They obviously hope to overturn this decision and are lobbying hard and using social media to get their message out.
Alexander will need to have three injections of Spinraza in his first month of treatment and then injections every four months for the next year.
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