Employers Don't Want to Pay for Life-Saving Cures for Rare Diseases
- N1C Moderator
- Sep 12, 2024
- 1 min read
Gerry Smith (Bloomberg)
September 5, 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 two 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 expensive treatments.
Bloomberg. (n.d.). Bloomberg.com. https://www.bloomberg.com/news/articles/2024-09-05/high-gene-therapy-costs-have-employers-refusing-workers-coverage?accessToken=eyJhbGciOiJIUzI1NiIsInR5cCI6IkpXVCJ9.eyJzb3VyY2UiOiJTdWJzY3JpYmVyR2lmdGVkQXJ0aWNsZSIsImlhdCI6MTcyNTUzNDM3OSwiZXhwIjoxNzI2MTM5MTc5LCJhcnRpY2xlSWQiOiJTSkMzU1pEV1JHRzAwMCIsImJjb25uZWN0SWQiOiIyOTdBMTNBQzdDNUY0N0U1QjM5RTE0NzQ0RjZBM0ExQiJ9.qKgxHpVwQ4IRdJr12iD4-UOsL4ANwv_11uBoZnv2XmE&leadSource=uverify+wall&embedded-checkout=true
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