Boy with heart defect to lobby for children’s health
Even with insurance, family needs Medicaid
Gabe Johnson of Kenosha is 12 years old. He likes visiting museums, playing Minecraft, reading and just being with his twin brother Jed.
But he’s soon going to step into an unfamiliar world.
He and his family are headed Monday to Capitol Hill in Washington, D.C., where during the week they’re scheduled to speak with top leaders of Wisconsin’s congressional delegation, including House Speaker Paul Ryan of Janesville.
The subject: The importance of Medicaid and other children’s health programs.
They’ll be part of Children’s Hospital of Wisconsin’s Family Advocacy Day.
It’s something Gabe says he needs to do. After all, Gabe, who has major congenital heart defects, has been cared for at Children’s Hospital since the day he was born.
He’s never met politicians like Ryan, and U.S. Sens. Tammy Baldwin and Ron Johnson, but he has seen them on television.
“We’re going to talk with representatives about Medicaid for children and the importance that it be funded,” Gabe said.
Gabe and his family aren’t asking for any specific action. They’re trying to promote the programs for the long term and provide a face for the families who are helped by Medicaid. The programs also help support institutions like Children’s Hospital.
Gabe survived open heart surgery
at nine days old. He has undergone nearly 50 procedures and surgeries since.
He has a lung disorder called plastic bronchitis and wears a mask in public.
His father, Nick, a public high school mathematics teacher in northern Illinois, has health insurance.
But Medicaid is the family’s secondary insurance and covers things like copays for doctors’ visits and medications. Those charges quickly add up because of the dozen medications that Gabe takes daily.
“Without Medicaid, we’d be very much in debt,” said Gabe’s father.
“I have decent insurance and I’m very grateful to the people of my school district,” he said. “But for the average American, where you have fairly high co-pays, this Medicaid and the Children’s Health Insurance Program (CHIP), cover a lot of that. As a result, if you don’t have particularly great insurance, this is one way you can help your kid out without breaking the bank.
“I know a number of families where this is the difference between making the bills or not.”
In February, Congress voted to fund the CHIP program for the next six years.
“Kids are the future of the country,” said Gabe’s mother, Jen Johnson. “We have to fund these programs because the kids are going to grow up to be doctors and politicians and be in charge of this country one day. So if we don’t take care of them they’re not going to get these opportunities later in life.”
“Every child needs the best start to life as they possibly can,” Nick Johnson said.
Gabe’s twin brother Jed said it’s hard sometimes to see his brother go through so many procedures.
“You have to hope and pray they go well,” he said.
The brothers were born prematurely at 35 weeks at a hospital in Kenosha and were transferred that night to the Neonatal Intensive Care Unit at Children’s Hospital.
It was at the hospital where Gabe’s heart defect was diagnosed.
“We’ve seen multiple disciplines here, cardiology, pulmonary, endocrinology, dermatology, orthopedics, ear nose and throat . ... We’ve seen numerous people over the years,” Jen Johnson said. “All of the cardiac anesthesiologists know Gabe by name, by sight.”
“We would not be where we are without the continuity of care that we get while we’re here,” she said.
The hospital has seen the twins grow up.
Gabe and Jed have big dreams about their futures.
Jed said he wants to work in the medical field.
And Gabe has an interest in politics. He doesn’t want to run for office — he wants to be an advocate.
“There’s going to be a lot of change in our country,” he said. “For the better.”