The Johnson family believes in working vacations.
On the agenda for a recent trip to Washington, D.C., were meetings with Wisconsin’s legislators to promote the importance of preserving Medicaid and the Children’s Health Insurance Program, known as CHIP.
Concern by families is justified because although funding for CHIP has been approved along bipartisan lines since 1997, last fall Congress failed to renew the program. In January of this year, however, Congress passed a bill reauthorizing CHIP funding for another six years.
Chief spokesperson and advocate for the Johnson family was Gabe Johnson, 13, who was born with a rare congenital heart defect that has significantly impacted his life, the lives of his parents, Nick and Jennifer, and that of his twin brother, Jed.
Both of the boys were born prematurely in Kenosha and transferred to Children’s Hospital of Wisconsin, Milwaukee, where after a week it was discovered that Gabe had a heart murmur, said Jennifer.
Gabe’s parents said they had no knowledge of his condition prior to his birth because on prenatal ultrasounds he was the “occluded twin,” less visible than his brother.
“It turned out to be hypoplastic left heart syndrome in which his left ventricle did not develop. He had his first surgery at nine days old and has had 50 surgeries since then,” Jennifer said.
As things went along, Gabe required care from other medical specialties as well, including pulmonary, orthopedics for surgeries on his legs, dermatology and ear nose and throat.
Extra insurance critical
A high school math teacher for the Zion-Benton School District in Illinois, Nick said that even though his insurance is good, the expenses of the surgeries and medications to manage his son’s conditions would have been impossible had it not been for assistance provided by Medicaid and the Children’s Health Insurance Program.
“(The extra insurance was) critical early on to help us pay the bills,” Nick said. “When you bring a kid home from the hospital and he’s suddenly on 12 different medications at $15 copay for every one — and an ambulance ride — CHIP and the Medicaid become essential so it’s not, ‘We can eat this much, or we can get this medicine.’”
It was this story that the Johnsons wanted to share in Washington with their state legislators.
The Johnsons were one of 50 families — one from each state — participating in Family Advocacy Day through Children’s Hospital Association and Children’s Hospital of Wisconsin to discuss health care issues with their local legislators in Washington.
The Johnsons met with five of Wisconsin’s elected officials: 1st District Representative and Speaker of the House Paul Ryan; U.S. Rep. Mark Pocan, D-Madison; U.S. Rep. Ron Kind, D-La Crosse; and U.S. Sens. Ron Johnson and Tammy Baldwin.
They were impressed that even those who do not represent their district agreed to meet with them.
Articulate and enthusiastic, Gabe explained that his family was selected to represent Wisconsin by the director of the Herma Heart Institute at Children’s Hospital of Wisconsin, who saw him on a video made by the Kenosha Unified School District last fall.
“A while back, toward September or October, I was chosen to be one of the Unified (School District) heroes and they produced a really cool video,” he said.
“I believe Gabe was selected because he has lived in and out of the health system for his entire life, and is so articulate and thoughtful,” wrote Aaron Kinney, executive director of the Herma Heart Institute, in an email to the News. “He could really tell his story at a level well beyond his age.”
On June 25, the Johnsons “beat a path” to the doors of the offices of the representatives and senators. Ryan met them in his office at the Capitol.
“We had a very to-the-point 10-minute discussion,” Gabe said. “Then afterwards he took us out onto the speaker balcony and said, ‘I have to go open Congress now.’”
Accompanying the family were Kinney and Lindsay Punzenberger, director of federal government relations at Children’s Hospital of Wisconsin.
“I was sent to support the family in their meetings, with general statistics and information about the hospital, but also the specifics related to his own medical journey from the hospital side, as health systems are often impacted more directly with some decisions than the families,” Kinney said.
The trip included some down time to enjoy the Capitol as well.
“Our hotel was two blocks from the White House, down Pennsylvania Avenue,” Jennifer said.
“We had ‘the good view’ — of the Washington Monument,” chimed in Gabe.
Jed said he enjoyed taking in several museums they had not had time to visit on a previous trip to the city two years ago.
Time constraints allowed for brief visits with the legislators. During most Gabe introduced himself and his situation and explained why keeping Medicaid and CHIP is important.
“I did most of the talking,” Gabe said. “I started by stumbling over my own tongue; then finally calmly started from the beginning.”
“Ryan asked what specific surgeries Gabe had, how Medicaid affects him, and what does it does for him,” Jennifer said.
The family also brought up funding for graduate training for pediatric doctors and the importance of health coverage for pre-existing conditions.
“A lot of people don’t think about adults with congenital heart disease,” said Gabe. “But if you have heart disease as a kid and don’t die, you’re going to grow up and still have heart disease.”
Congressional staff took notes, took pictures and shot video. Baldwin posted a video on her Facebook page.
The family learned that Sen. Johnson has a daughter with congenital heart disease and that Sen. Pocan is originally from Kenosha.
But the visit was not just about their family, stressed the Johnsons.
“My family has had the good fortune to have access to good quality health care insurance, so there’s kind of a moral obligation to go speak up for those who don’t,” Nick said.
“(Insurance assistance) is important to the families at almost all income levels, because when you have a kid like Gabe you can drop $50,000 on a weekend with medical bills,” he added. “Having something like CHIP and Medicaid gives you peace of mind that your kid is going to be taken care of no matter what.”
Nick said that the mission was one of exposure: exposing representatives and senators to a world with which they may not be personally familiar.
“If we went there and gave them some context for their decision-making, then it was a successful trip,” he said.
“I will definitely do advocacy again,” said Jennifer (with nodding assent from Nick). “Wherever they want to send me, I’d go.”
Gabe, who is about the enter eighth grade at Kensoha e-school, had this to say about the trip to Washington:
“We appoint the representatives and need to make sure the representatives listen to us. Social media platforms like Facebook and Twitter help get the message across, but at some point you have to actually sit down with the representatives face-to-face. It shows a sense of commitment, that you were willing to go there.”