Ohio man with 'butterfly disease' inspires federal legislation on care costs

Shane DiGiovanna, born without skin on his left leg due to EB, is currently in hospice care with terminal cancer and has months to weeks to live.

In the quiet arithmetic of rare disease, a young Ohio man named Shane DiGiovanna has spent his life calculating what fragile skin costs — not merely in bandages, but in dignity, displacement, and debt. Born with epidermolysis bullosa, a condition so unforgiving it is called the butterfly disease, DiGiovanna channeled decades of lived expertise into a friendship with a congressman and, ultimately, into federal legislation bearing his name. The Shane DiGiovanna Act asks the government to study what advocates already know: that covering the cost of bandages prevents the far greater cost of crisis

Ohio man with 'butterfly disease' inspires federal legislation on care costs

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