Insurer Covering Baby’s Surgery After Indiana Medicaid Denial

An Indiana infant born with a rare condition that likely would kill him by age 2 will receive a shot at a normal life after an insurance company said it will pay for an experimental procedure that the state’s Medicaid program refused to cover.

Seth Petreikis was born July 21 without a thymus gland that produces the T-cells the body uses to ward off infections, said his mother, Becky Petreikis of the Chicago suburb of Dyer, Ind. Seth also has a heart disorder that already has required one open-heart surgery, with a second scheduled for February.

The family has no private health insurance, and Seth is covered by the government’s Medicaid insurance program. But Indiana’s Medicaid program refused to cover the $350,000 to $500,000 cost of a thymus transplant at Duke University Medical Center in North Carolina because the procedure is considered experimental despite a 73 percent survival rate since it first was performed in 1993.

MDwise, the Indianapolis-based company that manages Seth’s Medicaid and had to reject coverage under state rules, said it had decided to pay for the procedure itself.

“I was stunned, elated. I cried. I thank God,” Becky Petreikis told The Associated Press. “This is truly a Christmas miracle.”

MDwise’s chief medical officer, Dr. Caroline Carney Doebbeling, said she and a colleague weighed the research and potential outcomes, and found the procedure a compelling opportunity for Seth.

“Given there are no other options for this baby, we took these facts into consideration and decided to pay for the procedure for the child,” she said.

Just a week ago, Petreikis and her husband, Tim, who runs a flooring company, received a letter from the Indiana Family and Social Services Administration notifying them that their final appeal of the Medicaid denial had been rejected.

“Oh my goodness, we cried,” said Petreikis, who also has a 3-year-old daughter. “We just thought that hope is lost and we now just have to sit and watch our baby die.”

Family and social services spokesman Marcus Barlow said Indiana’s administrative code bars experimental drugs, treatments and procedures.

“Indiana law is pretty clear,” Barlow said. “We don’t cover experimental procedures.”

Dr. M. Louise Markert at Duke developed the procedure in which she grows thymus cultures from the tissue of children who previously had thymus surgery and the cultures are transplanted into babies who need them. It’s performed on babies afflicted with what is known as complete DiGeorge syndrome, a genetic disorder in which patients have heart defects, a hormone condition and no thymus.

Without the surgery, most children with the disorder die by age 2.

Markert has performed the transplant 60 times since 1993; 43 of the children have survived to date. While each child’s case is unique, with some having other serious birth defects, Markert said many of those she’s treated lead fairly normal lives. The first to undergo the procedure is now a 17-year-old high school senior.

“I have a bunch of kids that are in schools, just delightful kids,” she said.

Seth’s father told Markert of MDwise’s decision to pay for the procedure on Friday afternoon, and she said she hopes to see Seth next month.

“This is just unbelievable,” she said. “I’m just floating.”