Local 'Butterfly Syndrome' Survivor Inspires Federal Legislation

Shane DiGiovanna's fight for EB care coverage leads to the 'Shane DiGiovanna Act'

Mar. 13, 2026 at 8:03pm

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Shane DiGiovanna, a Montgomery, Ohio man born with the rare genetic disorder epidermolysis bullosa (EB), has helped inspire new federal legislation aimed at reducing the high cost of care for families nationwide. The 'Shane DiGiovanna Act' would require the Department of Health and Human Services to study the impact of having Medicare fully cover the cost of bandages for people with EB, a condition that leaves skin as fragile as a butterfly's wing.

Why it matters

EB is a debilitating condition that affects about one in every 200,000 births nationally, requiring constant care and expensive bandaging. Many states do not currently cover the cost of these essential medical supplies, forcing families to relocate or face financial ruin. The proposed legislation could lead to significant long-term healthcare savings by reducing hospitalizations for those with EB.

The details

DiGiovanna, who became one of the first people diagnosed with EB to graduate from college, has been an avid advocate for others with the condition. He connected with U.S. Rep. Greg Landsman, D-Ohio, and the two developed a close friendship, leading Landsman to introduce the 'Shane DiGiovanna Act.' The bill would mandate a study on the impact of Medicare fully covering EB bandage costs, a necessary step before Congress could enact such a policy nationwide.

  • DiGiovanna was born with EB, a condition he has lived with his entire life.
  • Landsman introduced the 'Shane DiGiovanna Act' this week in Congress.
  • DiGiovanna is currently in hospice care with terminal cancer, with only months or weeks left to live.

The players

Shane DiGiovanna

A Montgomery, Ohio man born with the rare genetic disorder epidermolysis bullosa (EB), who has become an advocate for others with the condition and inspired new federal legislation.

Patsy McCormick

DiGiovanna's mother, who showed the extensive equipment needed to care for her son, including bandages that can cost up to $80,000 per month.

U.S. Rep. Greg Landsman

The Democratic congressman from Ohio who introduced the 'Shane DiGiovanna Act' after developing a close friendship with DiGiovanna.

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What they’re saying

“That's the thing that I always take away from our conversations — just do the right thing. Always do the right thing.”

— Greg Landsman, U.S. Representative

“But the study is going to show that if you pay for these bandages to be covered, these kids are going to not be hospitalized as often. Their health care costs are going to be lower in the long run than they would be.”

— Shane DiGiovanna

What’s next

Landsman's office does not yet have an estimate for how much the study could cost, but he hopes to win bipartisan support and pass the 'Shane DiGiovanna Act' in the coming weeks.

The takeaway

This legislation highlights the critical need to address the high costs of care for those living with rare, debilitating conditions like EB. By ensuring access to essential medical supplies, the proposed law could lead to significant long-term healthcare savings and improve quality of life for EB patients and their families.