Many families battling spinal muscular atrophy (SMA) could write volumes full of stories about their difficulties with insurance companies and their selective coverage. Thanksgiving day, the Washington Post ran a piece about a northern Virginia family who has a story to add to that tome.

Columnist Joe Davidson introduced the Rogers family. Shelby Rogers is eleven years old and has type 2 SMA. Davidson describes some of the equipment around her bedroom used to help her breathe, cough, and move. Shelby’s father, John, works for the federal government and the family is covered by Aetna insurance through his employer. Next year, Aetna is dropping coverage for the private nursing assistance that the family relies on to care for Shelby. While Shelby has Medicaid, it does not provide enough to pay for the nurses who dress and bathe Shelby, turn her as she sleeps, and exercise her weakening muscles.

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