• Mom says she'll fight for world's most expensive drug for daughter, costs $2M

    By: Natalie Dreier, Cox Media Group National Content Desk

    Updated:

    BLAINE, Minn. - You would probably anything to save your sick child. But a family in Minnesota says their insurance company has said no to a treatment that could cure her condition -- spinal muscular atrophy, or SMA.

    SMA is a genetic condition. It causes muscle weakness and can lead to death. If not treated, the condition causes respiratory issues where kids are unable to breathe on their own.

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    The medication is a gene therapy treatment called Zolgensma that must be administered by the time the child is 2 years old according to the Food and Drug Administration, and it comes as a high cost with a price tag of $2 million for one dose. It is considered the world's most expensive drug, CNBC reported when the treatment was approved.

    Maddy Bruce has only three weeks before it is too late and she turns 2, KARE reported.

    Her mother Angie Bruce has been trying to have her insurance reconsider the treatment, but despite multiple requests, the insurance, which is provided through the state of Minnesota, has denied the treatment.

    Officials with the state have refused to pay for the treatment. But it has approved another treatment -- Spinraza. That injection is done three times a year and she'll have the treatment her whole life. The cost is also steep, at more than $100,000 a dose, KARE reported

    Her mother told the television station, each time Maddy gets the spinal injection, she has to be sedated. But because of the treatment, Maddy is able to breathe on her own and even stand.

    In comparison, Zolgensma is a one-time treatment at $2 million, compared to the three times a year bill of $100,000 for Maddy's entire life, KARE reported

    But the Minnesota Department of Human Services, the department that is in charge of the state's Medicaid program, said part of the reason that it hasn't been approved is the maker of Zolgensma, Novartis Pharmaceuticals, is accused of manipulating the drug's test data, according to KARE

    Despite the concerns by state officials and the looming deadline that comes with Maddy's birthday, Angie Bruce told KARE she will appeal the decision to deny her daughter's treatment.


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