West Virginia Boy Hopes to Get Spinraza Treatment for SMA

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.

RELATED: Families in Northern Ireland win right to Spinraza treatment.

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.

Find out how Spinraza works in treating SMA patients. 

SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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