For most people, bandages are an afterthought. For 27‑year‑old Cincinnati resident Shane DiGiovanna, they have been the difference between staying alive and ending up in the hospital.
DiGiovanna was born with epidermolysis bullosa, often called “butterfly syndrome,” a rare skin condition that leaves his skin so fragile it blisters and tears with the slightest friction. He is now in hospice care, but his name and his advocacy are front and center in Washington, where a new federal bill aims to make the specialized wound‑care supplies he depends on far more affordable.
Working with U.S. Rep. Greg Landsman, DiGiovanna and his family have spent years pressing lawmakers to cover the staggering cost of those supplies, which supporters argue could actually prevent expensive hospital stays if patients could reliably get what they need at home…