Boone Begner's cardiologist recommended open-heart surgery out of state
His mother says she called the insurance company for months to get approval
When she was hung up on, she says, she channeled Tyler Perry's Madea
An Iowa mom drew inspiration from filmmaker Tyler Perry’s character Madea as she battled to get an insurance company to cover her son’s open-heart surgery.
Madea is the no-nonsense, ultraprotective matriarch in Perry’s blockbuster movies.
Lisa Begner’s 5-year-old son, Boone, was born with three chambers in his heart instead of four. In early November, his cardiologist advised open-heart surgery at Children’s Hospital of Wisconsin.
Begner called her insurance company to make arrangements.
In mid-March, after nearly five months of calls, she’d had enough.
Frustrated with a customer service representative, Begner, a registered nurse, asked to speak to her manager. She said the representative then hung up on her.
Begner, a fan of Perry’s films, says she thought: What would Madea do?
“I thought, ‘Mama Madea would say, “Uh uh! You ain’t talking to me like that!” ’ ” she said.
Begner says she knew that Madea would rain holy hell on the problem.
So she went to the top: That evening, she emailed the governor of Iowa, Kim Reynolds.
Begner received a call first thing the next morning from Reynolds’ office. The staffer told Begner she’d be getting a call from her son’s insurance company, Amerigroup.
The next week, Begner received a call from the company, saying Boone’s procedure in Wisconsin had been approved. Her son had the surgery Thursday morning, and Begner says he is recovering well and expected to go home Tuesday.
“Our top priority throughout this process was to help the child receive access to the care he needed. Amerigroup communicated with the mother on numerous occasions to keep her updated on our efforts. As he recovers from surgery, our case managers will remain engaged and in contact with the family to ensure that the child continues to receive medical care and support services,” company spokesman Tony Felts wrote in an email to CNN.
Felts added that “doctors did not indicate that surgery was necessary right away.”
In the procedure, surgeons removed part of a slow-growing membrane in his heart that would at some point impede blood flow. Dr. Benjamin Reinking, Boone’s cardiologist at the University of Iowa, said that although there was no particular date for doing the procedure, “it needed to get done.”
Begner is relieved her son was able to have the procedure but questioned why it took so long to work it out.
“It’s absolutely crazy that I had to go that far, that I had to get the governor involved,” she said.
Thursday’s surgery was the fifth for Boone. He had the other four before his 1st birthday.
“He’s fought for his life so many times,” Begner said.
The young boy’s journey has been so perilous that when he started preschool in September, local media celebrated with stories about how he had beat the odds.
Begner said she had great admiration and respect for Madea because of the way she fights for her family.
“She doesn’t back down. She lets people know that ‘just because you’re in a position of authority, you don’t have a right to treat me disrespectfully,’ ” Begner said. “She’s an advocate for her kids.”
Just before her son was wheeled into surgery, she wrote in a text to CNN, “I will hand my child over to [the surgeons], I hope and pray our Lord gently guides his doctor’s hands. I pray Boone has sweet dreams, and feels nothing but God’s hands on his heart.”
Like nearly 40% of all children in the United States, Boone has his health insurance through Medicaid. The state of Iowa contracts with Amerigroup to manage his policy.
His battle with Medicaid is not unusual.
Unlike Medicare, the health insurance program for the elderly, Medicaid programs are run individually by each state. That means getting surgery out of state often requires special permission, even when all parties agree that the patient would be better served by that out-of-state program.
Reinking recommended Children’s Hospital of Wisconsin for several reasons.
First, Boone had his first heart surgery there as a baby, and so the surgeons there would be more familiar with the scarring from that procedure.
Second, they would be more familiar with Boone’s unique anatomy. He was born with a rare and sometimes life-threatening birth defect called heterotaxy syndrome, so in addition to his three-chambered heart, his stomach, liver and other organs are in the wrong places, and he has eight spleens.
“Wisconsin is the most appropriate place for him to have his surgery,” Reinking said.
Dr. Roger Mee, the former chief of pediatric surgery at the Cleveland Clinic, agrees.
“His first surgery he had as a baby was a big deal, and this second (heart) surgery is going to be even more dangerous,” he said. “It’s a complex situation, and it just makes common sense that it should be done by the surgeons who did the first one.”
Mee also pointed out that studies show that larger, more experienced pediatric heart centers like the one in Wisconsin have better success rates with more complex surgeries than smaller programs.
Now retired, Mee said that while he practiced, he often saw families have to fight Medicaid programs to have specialized heart surgeries out of state.
“It makes me sad. They should put children first. That’s the sign of a caring community,” he said.
Aaron Kinney, executive director of the Herma Heart Institute at Children’s Hospital of Wisconsin, said Iowa Medicaid wanted to pay the hospital less than what it would have paid a hospital in Iowa to do the same procedure.
Amerigroup spokesman Felts did not address that claim directly but said that “during the past few months, we have worked to arrange surgery for this child to be performed and covered in full.”
Kinney said payment negotiations between hospitals and out-of-state Medicaid programs can be “very drawn-out,” with weeks sometimes turning into months.
“This has got to be tremendously frustrating for families. I can see how they would say, ‘Wait, this is partially funded by the federal government. Why can’t my child be seen where my doctors are telling us to go?’ ” he said.
“I think we can do better for these patients,” he added.
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Frederick Isasi, executive director of Families USA, a health care advocacy group, agrees. He said families on Medicaid who need specialized care out of state often call his group for help.
“These families are working hard every day just to care for their children with special health care needs,” he said. “Instead of helping them, we’re making them spend hours and hours struggling with bureaucrats. That’s the last thing we should be doing.”