As a parent, you will do whatever it takes to save your child’s life….this mother is doing all she can.
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.
The medication is a gene therapy treatment called Zolgensma that must be administered by the time the child is 2 years old and it costs…. $2 million for one dose!!!! It is considered the world’s most expensive drug. I mean seriously? $2 million? Why is this soooo expensive. No one can afford that? Who decides these prices?
Maddy Bruce turns 2 in 3 weeks. Of course mom is going crazy trying to get this drug for her daughter.
Her mothers insurance is provided through the state of MN… and 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…. geez. so much better.
What a horrible place to be in, my heart goes out to this mother. So sad…looks like so many other parents have had to deal with the same situation.
What do you do?
Check out the story from local TV station KARE