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.
As detailed in a press release from Rep. Greg Landsman's office, the congressman has introduced the Shane DiGiovanna Act, a proposal to test whether Medicaid payment for specialized epidermolysis bullosa wound care can reduce hospital visits and lower overall spending. Landsman said he worked directly with DiGiovanna on the measure and called him "an incredible person" whose lived experience and persistence shaped the bill.
DiGiovanna's mother, Patsy McCormick, told WLWT that regular, specialized bandaging has been "what's kept him alive" and that the cost of supplies for severe cases like her son's can climb beyond $80,000 a month. She said the family moved to Cincinnati in 2001 so Shane could access specialized care and that even now, as he receives hospice care, he has continued to push for the legislation that bears his name.
What the Shane DiGiovanna Act Would Do
The bill would require the U.S. Department of Health and Human Services to run a two‑year, nationwide Medicaid demonstration project focused on epidermolysis bullosa care. During that test period, specified EB items and services would be treated as required medical assistance for participating state Medicaid programs.
According to the legislation text, those covered supplies would include primary and secondary wound dressings, gauze, bandage retainers, and basic pain and topical products. The demonstration would also come with reporting requirements for HHS, which would have to evaluate spending, health outcomes, and ways to prevent hospitalizations tied to lapses or gaps in wound care.
Why Wound‑Care Coverage Is Such a Big Deal
EB advocates say the financial stakes are enormous. Research shows that wound‑care costs for the most severe cases can be shockingly high and that reliable access to appropriate dressings is critical to keeping patients out of the hospital.
A conference summary cited by MDedge Dermatology referenced findings from the PEBLES registry, which reported annual dressing costs above £85,000, or roughly $112,000, for some severe cases. Advocacy organizations such as debra of America emphasize that these specialized products are not luxury items, but everyday medical necessities for people living with epidermolysis bullosa.
Cincinnati Care Hub and What Comes Next
Cincinnati has played a central role in DiGiovanna's journey. Cincinnati Children's Hospital operates a multidisciplinary Epidermolysis Bullosa Center that treats patients from infancy through adulthood and has been at the heart of his care since his family relocated to the city. Cincinnati Children's describes monthly EB clinics and individualized care plans designed to manage complex cases like Shane's over the long term.
Landsman's office notes that the Shane DiGiovanna Act has only just been introduced and still has to clear several hurdles in Congress. It will need committee consideration and broader backing before any HHS demonstration can begin, and Landsman's team has underscored that the proposal was crafted in close consultation with Shane himself, according to Rep. Greg Landsman's office.
Supporters argue that, if the demonstration moves forward, it could yield the data lawmakers need to consider permanent changes to Medicaid coverage for EB wound care. Preventing avoidable hospitalizations, they say, would likely save public dollars compared with leaving families to navigate sky‑high acute‑care bills on their own. As WLWT reported, advocates believe that when patients have enough of the right bandages, they can often avoid the kind of infections and complications that lead straight to a hospital bed, a claim the HHS demonstration is specifically designed to put to the test.
