Caleb Thurman and his mother, Charice Fort, went to Washington, D.C., to meet with lawmakers on behalf of Akron Children’s Hospital.
The two were among 36 patients and their families representing pediatric hospitals in the nation’s capital last week as part of the Children’s Hospital Association’s Speak Now for Kids Family Advocacy Day.
Each year, the nonprofit group works with children’s hospitals across the country to bring the voices of young patients and their families to Capitol Hill.
Participating families spent a day meeting with their elected representatives to lobby for continued funding for Medicaid and other programs that support medical care for children.
“Why tell them if you can show them?” Caleb said. “You see all the families and everyone’s story is unique. It’s good to show people.”
Caleb met with several federal lawmakers from the Akron area, including Rep. Tim Ryan, D-Niles, who invited him to the floor of the House after the two chatted about their mutual love of baseball.
“I met so many people,” Caleb said.
During their meetings, Caleb and his mother shared their firsthand knowledge of the importance of federal funding to help children’s hospitals train the nation’s future pediatric specialists.
Caleb was diagnosed five years ago with Crohn’s disease, an inflammatory bowel disease that causes chronic diarrhea, weight loss and fatigue. He subsequently found out he also has juvenile rheumatoid arthritis and psoriasis, a skin condition.
The active preteen who will be an eighth grader at Litchfield Middle School in the fall sees five different specialists at Children’s to treat his chronic illnesses.
“It’s so important that we get these educated people in these specialty fields,” his mother said.
The family also talked about the importance of the Bureau for Children with Medical Handicaps (BCMH), a program run by the Ohio Department of Health with state and federal funds to help with medical bills for children and some adults.
The program helps cover out-of-pocket charges for doctors’ fees, hospital care, medications, durable medical equipment and other medical costs that aren’t covered by private insurance or other government assistance.
Though the single mother has health insurance through her job as a medical coder, BCMH helps pay for thousands of dollars’ worth of copays for his medications and other items that aren’t covered.
“It stands in the gap where my private insurance doesn’t cover,” she said. “It’s really a blessing to have this.”
For example, she said, her insurance will only pay for Caleb to get new leg braces every two years — an amount of time that’s too long to wait for a growing boy.
Without the extra help, she said, “I would have to actually quit my job to be on welfare.”
Caleb and his mother were accompanied in Washington by Charlie Solley, Akron Children’s Hospital’s director of government relations.
Solley said it makes an impact when families share their stories with the lawmakers.
“It really is a different type of visit,” Solley said. “It’s very powerful.
“ … I’m a professional advocate, and when I walk through the door I look like another suit. It’s really important to put a personal face on it. This isn’t data points I’m presenting to them — this is Caleb.”
Cheryl Powell can be reached at 330-996-3902 or email@example.com. Follow Powell on Twitter at twitter.com/abjcherylpowell.