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On January 1, 2017, the KHI News Service became part of KCUR public radio’s new initiative, the Kansas News Service. The Kansas News Service will continue to cover health policy news and broaden its scope to include education and politics. All stories produced by the former KHI News Service are archived here. Stories and photos may be republished at no cost with proper attribution and a link back to

One family’s growing worry: Paying for their child’s cancer care in a post-ACA world

By Alex Smith, HEARTLAND HEALTH MONITOR | November 17, 2016

One family’s growing worry: Paying for their child’s cancer care in a post-ACA world
Photo by Alex Smith/Heartland Health Monitor Keely Edgington holds her daughter, Lula, at their family-owned restaurant, Julep, in Kansas City, Missouri. Lula was diagnosed with a neuroblastoma when she was 9 months old. She’s now 16 months old.

Last week’s election results stunned a lot of people who get health insurance coverage through the Affordable Care Act.

President-elect Donald Trump and the Republican-controlled Congress say they want to scrap the law, but what might replace it remains unknown.

That has left some Missouri and Kansas families in limbo, unsure what will become of their medical care.

Among them are Keely Edgington, Beau Williams and their daughter Lula Williams. If you stop by Julep, Edgington and Williams’ Kansas City cocktail bar and restaurant, you might catch a glimpse of Lula just as it opens in the midafternoon.

She’s a blonde, blue-eyed 16-month-old who likes to check out the customers before the place gets too busy.

“She like to go out there and essentially just stare everybody down and smile at them,” Edgington said.

You wouldn’t guess it from Lula’s shy but happy disposition, but she’s been through a lot in her short life.

When she was 9 months old, doctors discovered a neuroblastoma — a type of cancer that starts in the nerve cells of an embryo or fetus — in her adrenal gland.  

Photo by Children’s Mercy Hospital Dr. Jaszianne Tolbert, Lula’s pediatric oncologist, says Lula needed surgery because the size and location of her tumor threatened nearby organs.

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Cancers in infants sometimes go away on their own, but Dr. Jaszianne Tolbert, a pediatric hematologist/oncologist at Children’s Mercy Hospital, said Lula needed urgent surgery because the size and location of her tumor threatened her organs.  

“Lula’s, actually, was sort of wrapped around some of her arteries, and so if that tumor were to get bigger and compress some of those structures, then you could have more problems than just the tumor itself,” Tolbert said.

To minimize unintended damage to Lula’s organs, Children’s Mercy doctors installed a portal in her chest to deliver rounds of chemotherapy drugs into her heart.

The cost of the treatment was staggering. Edgington says she stopped looking at bills after they topped $350,000 — and that was before the surgery.

Most of the cost was paid for through the insurance the family obtained on the Affordable Care Act’s online marketplace,

As small-business owners, Lula’s parents said the exchange and subsidies they received were the only way they could afford coverage.

“We looked into insurance through other avenues, and it was just not possible,” Edgington said.

Still, the couple had to pay a deductible of $10,000 and take steps they never imagined to make ends meet.

“I had a friend that set up a gift fund for us and helped with everything (that) covered that $10,000,” Edgington said. “We both stopped working here, and so we did not pay ourselves for about five months. That helped us pay the bills.”

The good news is that Lula responded well to the treatment. She’s been in remission for a few months, and Tolbert said her outlook is good.

“Her age is one of the reasons for the great prognosis, plus the fact that she had really favorable characteristics,” Tolbert said. “And so those patients have survival rates as high as 85 percent.”

“Do we have to move to Canada and hope we get coverage there? That’s really extreme, but what wouldn’t you do for your child’s life?”

- Keely Edgington, whose family buys insurance through the Affordable Care Act marketplace

But the family isn’t out of the woods by any means.

At a minimum, Lula will need intensive, expensive screenings and scans for a few years. Then she’ll have to be monitored for health conditions that might result from her chemotherapy.

And there’s always the chance she might take a turn for the worse.

Since the election, the couple say they’ve been walking on eggshells, waiting to see what happens with their coverage — and not just because they fear losing their subsidies.

Before the Affordable Care Act, insurance companies could deny coverage to individuals with pre-existing medical conditions and set lifetime limits on the amount they’d pay for someone’s care.

Insurance costs were based on an individual’s health history, so someone with a chronic disease might pay much more than a healthy person.

In the last week, Lula’s parents have been wondering how they’ll cope if the ACA, or its key provisions, are scrapped. They’ve pondered a second mortgage, selling their business — and even more desperate measures. 

“Do we have to move to Canada and hope we get coverage there?” Edgington said. “That’s really extreme, but what wouldn’t you do for your child’s life?”

In the near term, families like Lula’s probably won’t see an abrupt return to pre-ACA conditions, said Saint Louis University law professor Sidney Watson. She doesn’t expect big changes to come until at least 2018.

“It’s going to take awhile for Congress to figure out what they want to replace the Affordable Care Act with, and that’s going to be a discussion and dialogue we’re going to hear a lot about in the coming year,” she said.

Moreover, to create a plan that will satisfy voters, Watson said Congress will not only have to preserve many of the ACA’s provisions but figure out how to solve the problem of rising insurance rates. 

“We know one of the complaints about the Affordable Care Act is that people think their premiums and their cost-sharing are too much now. So I don’t think that solutions that make premiums go higher and out-of-pockets go higher are going to be popular,” Watson said.

Trump said he wants to keep the ACA’s policy on pre-existing conditions, but Keely’s father, Beau, said it’s not much comfort from a leader whose policy proposals so far have been vague and changing.

“That’s what’s discouraged me most about this past presidential campaign is that there just never really seemed to be a plan other than some promise that thing were going to be better, somehow,” Williams said. “Well, I’m ready to see it. I hope it’s there. I guess we’ll find out.”