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One Family’s Growing Worry: Paying For Their Child’s Cancer Care In A Post-ACA World

Alex Smith
Heartland Health Monitor
Keely Edgington and her daughter, Lula, pose inside their family-owned restaurant, Julep, in Westport. Lula was diagnosed with a neuroblastoma when she was nine 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 many 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 likes to go out there and essentially just stare everybody down and smile at them,” Edgington says.

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 nine 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.  

Urgent surgery

Credit Courtesy 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.

Cancers in infants sometimes go away on their own, but Dr. Jaszianne Tolbert, a pediatric hematologist/oncologist at Children’s Mercy Hospital, says 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 says.

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 federal health exchange.

As small business owners, Lula’s parents say 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 says.

Still, the family 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 says. “We both stopped working here, and so we did not pay ourselves for about five months. That helped us pay the bills.”

Looking to the future

The good news is that Lula responded well to the treatment. She’s been in remission for a few months, and Dr. Tolbert says 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 says. “And so those patients have survival rates as high as 85 percent.”

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 family says they’ve been walking on eggshells, waiting to see what happens with their coverage – and not just because they fear losing their subsidies.

Considering the options 

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 lots more than a healthy person.

In the last week, Lula’s family has 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 says. “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, says Saint Louis University law professor Sidney Watson. She doesn’t expect big changes to come until at least 2018.

“It’s going to take a while 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 says.

Moreover, to create a plan that will satisfy voters, Watson says 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 says.

Trump says he wants to keep the ACA’s policy on pre-existing conditions, but Keely’s father, Beau, says 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 says.” Well, I’m ready to see it. I hope it’s there. I guess we’ll find out.”

Alex Smith is a reporter for KCUR, a partner in the Heartland Health Monitor team. You can reach him on Twitter @AlexSmithKCUR

As a health care reporter, I aim to empower my audience to take steps to improve health care and make informed decisions as consumers and voters. I tell human stories augmented with research and data to explain how our health care system works and sometimes fails us. Email me at alexs@kcur.org.
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