Morgantown family fights for life-saving medication

Published: Mar. 21, 2017 at 3:59 PM EDT
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When we last saw the Johnson family, their son was approved for life-saving medication after years of waiting. The FDA approved the drug, Spinraza, and Alex was set to start treatments.

But now, the family is facing another setback.

"On March 9th we received a denial letter from the insurance company. We appealed, my doctor and I sent in a seven page letter about other patients that are receiving this medicine, the effects of the medicine, and how it would work for Alexander, and we were denied again," said Autum Johnson, Alexander's mother.

The family said their insurance company told them they were originally approved.

"The insurance company is denying him based on the severity of his disease. They say his disease is too severe for this medicine. If it's too severe then he is the one that needs it the most," said Johnson.

Alex has to be watched and monitored around the clock and Autum said it's a race against time to receive the medication.

"Alexander is the most severe case. When I was handed him in the hospital after he was diagnosed they told me he would only live six months. It is an absolute miracle that he has made it this far. He is going to be three in August and I want him to make it to 18. Give me the medicine," said Johnson.

Autum is constantly making phone calls and is not giving up.

"I make as many phone calls as I can. I talk to as many people as I can to see who can help me and to see what is open to me as far as figuring out what is the quickest way for me to get my son this medicine. I'm not just taking one avenue. I am going to take all of the avenues," said Johnson.

Alex has been enrolled in a Biogene free drug trial program. This will allow him to receive several shots that he needs throughout the year, but it will not cover the procedure.

You can follow Alex's journey by visiting his Facebook page, Prayers for Alexander.

To see our previous stories with the family, click the Related Links tab to your right.