Employers Don't Want to Pay for Life-Saving Cures for Rare Diseases

Some employers resist covering costly gene therapies, forcing workers to find other ways to get the treatments.

Maria Colon-Robles and her son, Adrián, who has Duchenne muscular dystrophy.Photographer: Xavier Garcia/Bloomberg
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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.