ALS and the crushing cost of care: How 4 Americans face the 'bankruptcy disease'

May 14, 2026 - 22:23

ALS is often called the "bankruptcy disease," a grim nickname that captures the financial devastation it brings. But for those living with it, the emotional costs are just as heavy as the medical bills. Four Americans shared their stories of navigating a disease that drains bank accounts and spirits alike.

For one patient in Colorado, the price of a single medication hit $145,000 a year, even before factoring in the cost of a wheelchair-accessible van, home modifications, and round-the-clock caregiving. She described the constant math: how to stretch disability payments and savings to cover the basics while knowing the disease will only demand more. Another man in Ohio, a former construction worker, watched his life savings vanish within two years. He now relies on Medicaid, but the wait for equipment like a breathing machine can stretch for months, leaving him dependent on family for everything from bathing to eating.

A third patient, a mother of two in Texas, spoke of the hidden toll. She quit her job to become a full-time caregiver for her husband, a decision that cut their household income in half. The stress of managing insurance denials and appeals has aged her, she said, and she often skips her own health checkups. Meanwhile, a retired teacher in Florida described the isolation. Friends drifted away, unable to handle the reality of her decline. She now spends most days alone, staring at a ceiling she cannot afford to have repainted because every spare dollar goes to a nurse's aide.

These four stories reflect a broader crisis. ALS care can cost over $250,000 a year, and most insurance plans cap coverage or exclude key therapies. Families are left to choose between dignity and debt. As one patient put it, the disease does not just take your muscles. It takes your home, your future, and your peace of mind.