People magazine is the latest to bring attention to Cincinnati’s Shane DiGiovanna and his rare, debilitating skin disease.
DiGiovanna, a 28-year-old Montgomery resident with a condition called epidermolysis bullosa or EB, is featured in a 800-word story with five photos in a People story posted March 22.
Born with EB, DiGiovanna has been fighting to protect his extremely fragile skin and treat related skin cancers for years. A survivor of more than 150 surgeries, he entered hospice care last October and has most recently been battling severe inflammation and failing kidneys.
He told People that doctors have told him he has three months to a year to left to live. “At 27, I am already old for someone with severe EB,” he told the magazine.
‘Miraculous Life,’ then Enquirer story and legislation
DiGiovanna has long been known in the Cincinnati Children’s Hospital community, home of most of his medical care.
Last spring, he shared his story with The Enquirer, after a Substack site called The Bulwark published “The Miraculous Life of Shane DiGiovanna.”
In April, The Enquirer featured him as one of seven local residents reacting to the first 100 days of the Trump administration.
His take: Fear of possible funding cuts for Medicaid, which covers most of his $4 million in annual medical expenses.
DiGiovanna was more concerned for kids born with EB today and tomorrow, he said then. “I am much closer to the end of my life than the middle,” he said.
More recently, DiGiovanna got the attention of Cincinnati’s U.S. Rep. Greg Landsman. Earlier this month, the 1st District Democrat from Mount Washington introduced a bill he titled the “Shane DiGiovanna Act.” The legislation directs the federal government to study whether paying for wound care for people with EB would reduce their hospital visits and lower their costs.
Landsman’s bill also inspired a story on Local 12 WKRC-TV.
Bandages can cost ‘tens of thousands’ a month
DiGiovanna told People that Landsman’s bill asks a simple question. “What happens if we treat wound care for EB patients not as a luxury, but as essential medical care?”
“We already know the answer,” he continued. “When patients have what they need, they stay out of the hospital. They suffer less. They live longer, fuller lives.”
EB patients need bandages that can cost tens of thousands of dollars a month, he added in a press release from Landsman’s office. Insurance coverage can be inconsistent or unavailable.
Landsman’s bill, he said, “can make sure that no EB patient is denied the care they need simply because of the cost of bandages to keep them alive.”
This article originally appeared on Cincinnati Enquirer: People magazine features Cincinnati man with rare skin condition
Reporting by Patricia Gallagher Newberry, Cincinnati Enquirer / Cincinnati Enquirer
USA TODAY Network via Reuters Connect
