Minutes before a 10-hour surgical procedure, 8-year-old Olivia Olson sat in her hospital bed and grinned. With calm confidence, she explained why the operation was so important to her.
“I think I look beautiful and I don’t care what other people think of me,” Olivia said. “I just want to have a big ear so people won’t bully me in the future.”
Olivia was born with a rare congenital condition called microtia, which prevents the development of the outer ear. Fewer than 200,000 people in the United States have microtia, according to research. National Institutes of Health. Olivia's right ear developed normally, but her left ear never fully developed.
Her parents, Annie and Dave Olson of Oro Valley, Arizona, knew from birth that she would need surgery to repair her ear. But up until the day of surgery last month, their insurance companies, Anthem Blue Cross and Blue Shield, repeatedly refused to approve coverage for a procedure with the surgeon the Olsons wanted to use.
Only a few doctors in the United States regularly perform the type of surgery Olivia needed. Most of them, including Dr. Cheryl Levine, a pediatric craniofacial plastic surgeon in private practice in Torrance, California, were not available to the Olsons.
“The anatomy of the ear is very complex, with a lot of detail, shadows, highlights, etc., so just physically recreating something that complex is very difficult. It's rare to find a surgeon who specializes in this,” Levine said. “If you don't have enough experience, you'll have a lot of problems with it complex operation“
The family chose Levine after years of research. They felt her reconstruction method, which involved using a 3D printed implant to reconstruct the ear, was best for Olivia. (Another method involves using the patient's rib cartilage to reconstruct the ear.)
“We got the rejection letter and it was literally like a stab in the heart,” Annie Olson said. “We were like, what do we do now?”
The family requested what is called an “exemption,” which allows the patient to receive in-network benefits for an out-of-network provider. The request was initially denied; instead, Anthem provided them with a list of six in-network doctors– said the Olsons.
NBC News reached out to all six. None of them said they had surgery.
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“Very few programs actually offer someone enough surgical experience that when they leave the program and go into private practice, where they feel comfortable enough to do this type of surgery,” said Dr. Arturo Bonilla, a pediatric microtia reconstructive surgeon in San Antonio. “It’s very specialized.”
Bonilla, who uses the rib graft technique to reconstruct ears, said he routinely requests exceptions for his patients — and while the requests sometimes have to be appealed, they are almost always approved by all insurers, including Anthem Blue Cross and Blue Shield.
“It’s rare for someone to say, ‘No, we’re not going to approve it anyway,’” he said.
The Olsons discussed canceling the surgery, but ultimately decided to keep the date and spare Olivia the trouble they were facing by paying for it.
After numerous appeals and denials, the Olsons raised funds, borrowed money from family members and turned to credit cards. But this was not enough. In the end, Dave Olson received a huge portion of the cost of the operation (about $100,000) from his 401(k) plan.
He said he didn't hesitate to take money from his pension fund. “It’s my responsibility as a parent to make sure my kids have everything they need,” he said.
“If we had known this was going to be the outcome, we would have been responsible people and started saving money the day she was born rather than finding out at the last minute and then having to be penalized for taking an early withdrawal from your 401(k),” Annie Olson said.
NBC News reached out to Anthem a couple of days before Olivia's surgery and was awaiting a full response.
On the day of the surgery, as Olivia lay on the operating table, the Olsons finally received word that Anthem would grant an exception to the break, a change the Olsons attributed to NBC News' involvement.
“Every day, day after day, we literally went through what felt like a battle,” Dave Olson said. “Then, at the 11th hour during surgery, you say they're going to cover it up. It's like, what? Like, why? Why? Why now?”
In a statement to NBC News nearly two weeks after Olivia's surgery, Anthem Blue Cross and Blue Shield said, “We are pleased that the member was able to get the care she needed. Although the member's plan does not cover out-of-network providers when an in-network provider is available, we were able to make a unique, one-time exception to ensure that her care was not delayed.”
Levine, who performs about 120 microtia surgeries a year, said that in 2025, getting waivers overturned and getting an exception approved for microtia surgery will be much more difficult. In 2024, she said, more than 90% of her patient pass exceptions at Anthem were approved or denied and rescinded. In 2025, with the exception of Olivia, none of her Anthem patients received approval.
“It just became a very slow trend that peaked in the last year,” Levine said. “It was difficult and we had to work a lot harder to get agreement to negotiate.”
Anthem Blue Cross and Blue Shield did not respond to questions about Levine's claim that her patients were denied disenrollment from the program this year. However, the company said it is approaching Levine to propose a potential intranet agreement.
The financial details of Olivia's case are still being finalized, but she said she's already looking forward to the future.
“When he's fully recovered, I'll say, 'Okay, it was just a little bump,' and then I'll just move on for the rest of my life,” she said.
