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Senator gets involved with family fighting for life-saving drug

6 months 3 weeks 4 days ago Tuesday, December 10 2019 Dec 10, 2019 December 10, 2019 6:45 PM December 10, 2019 in News
Source: WBRZ

BATON ROUGE - Little Axel Dennis and his family are still waiting for their State Fair Hearing to plead their case.

The 16-month-old boy is living with Spinal Muscular Atrophy (SMA), Type 1. While his doctors are giving him the green light for a gene replacement therapy treatment called Zolgensma, Louisiana Medicaid has denied the approval twice.

Axel's story has been viewed by thousands and thousands of people around the country. Sen. Bill Cassidy has even gotten involved by writing a letter to the Louisiana Department of Health Medicaid Services.

"We're going to push, we're going to push, we're going to push until we can get a result that benefits that child," Cassidy said.

Zolgensma is known as the world's most expensive drug, at $2.1 million. Axel's mother, Andrea James, says her son is being denied because he has a trach. Axel has that trach tube because of an incident in the hospital unrelated to SMA. It's now a race against time since Zolgensma has only been approved for children under the age of two.

Sen. Cassidy urges others with similar issues to contact his office. 

"We need to come up with a mechanism by which these very expensive therapies can be given routinely," he said. "We know the hospital will be paid, and we know the child will have it in a timely fashion. We also need to know that we, the taxpayers, can afford to pay for it. We're working on every part of it, it should not have to take a letter from a senator to make something happen."

James says the treatment will be able to give Axel a higher quality of life and they'll stop at nothing to help their son.

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