Medical Xpress September 9, 2024
As a wave of gene therapies with multimillion-dollar price tags hit the market, many employers are dropping coverage and leaving families in a bind.
For Amanda Reed, the blows came one after another, a gut-punch introduction to motherhood.
Newborn screening this spring revealed her twin boys had a rare inherited condition called spinal muscular atrophy, or SMA. The severe form can be fatal by the age of 2 if left untreated.
The good news: a gene therapy called Zolgensma could potentially cure them. Then the bad: It would cost $4.2 million to treat both boys. Reed’s employer, the nonprofit hospital owner Mosaic Life Care in St. Joseph, Missouri, had recently decided to stop paying for gene therapies, the world’s most...
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