Landsman Introduces Bill to Lower Costs for Patients with Rare Skin Disease Named After Constituent Shane DiGiovanna

Cincinnati, OH - This week, Congressman Greg Landsman (D-OH-01) introduced a bill to help people living with Epidermolysis Bullosa improve their health and lower hospital costs.

Epidermolysis Bullosa (EB) is a rare genetic condition that makes the skin extremely fragile, which can cause several medical complications. EB affects 1 out of every 20,000 births in the United States.

Landsman introduced the Shane DiGiovanna Act - legislation that directs the Department of Health and Human Services (HHS) to study whether paying for wound care through Medicaid would reduce hospital visits for EB patients and lower overall costs. Then, HHS must report back to Congress.

Shane DiGiovanna is a constituent of Landsman's who has lived with EB and its debilitating symptoms his entire life. Despite these challenges, DiGiovanna has become a tireless advocate to raise awareness of the disease and support those impacted by it.

Congressman Landsman:

"Shane is an incredible person with a huge heart, and he has become a good friend to me. We are so happy to have worked with him on this bill to help those living with EB get the best care to live better lives."

Shane DiGiovanna:

"Today marks an important step forward for patients living with Epidermolysis Bullosa and the families who care for them. The bandages that keep us alive can cost tens of thousands of dollars every month, and coverage is inconsistent or unavailable. The Shane DiGiovanna Act will help ensure that Medicaid patients with EB can access the wound care supplies they need without bankrupting their families.They are not comfort items. They are essential medical care. I want to thank Congressman Landsman for his leadership and for listening to the EB community. Together, we can make sure that no EB patient is denied the care they need simply because of the cost of the bandages that keep them alive."

Brett Kopelan, debra of America Executive Director:

"debra of America would like to express our heartfelt and sincere gratitude to Congressman Greg Landsman for his dedication and commitment to helping the EB community by introducing the Shane DiGiovanna Act. EB is a devastating rare disease compounded by the fact that most of the population is unable to obtain the necessary wound care supplies that are critical to their health and well-being. The Shane DiGiovanna Act would demonstrably change the trajectory of the quality of life for the better for those that suffer from what we call "the worst disease you've never heard of."

Read the bill text here.

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