Kasey Jackson's 13-year-old son, Elijah, is battling cancer. Again.
All of her thoughts should be on her son and his health, but Jackson said she's preoccupied. In October, she found out from her insurance broker that Children's Mercy Hospital in Kansas City, Missouri, where her son receives care, will no longer accept any coverage plans associated with the Affordable Care Act, or ACA, starting in January 2027.
"I am very angry right now," Jackson said in a recent TikTok that was viewed by more than 400,000 users. "There are no options available for people that do not qualify for an employee-sponsored plan to get care for their children, at the only children's hospital where they can get care."
their kids do.
Jackson and her husband were self-employed when Elijah was first diagnosed with acute lymphoblastic leukemia at 8 years old. He went through treatment, was cancer-free for four years and then relapsed in July 2025. The Jacksons sold FlutterHabit, their eyelash extension company, to a private equity firm in 2023 to focus on Elijah's health and are now effectively retired.
The Jacksons and their children have for years been on ACA plans, which Jackson said cost $3,000 each month to keep. But unless Children's Mercy Hospital finds another ACA plan to pick up coverage for 2027, the Jacksons and hundreds of other families will be left in a lurch, including families who aren't currently caring for a sick kid. There are thousands of families with healthy kids on ACA plans who don't realize they won't be able to go to Children's Mercy if something happens, Jackson said.
"They're not going to know until their kid gets sick, is there is nowhere else to go," she said. "I can't even imagine when I got my son's diagnosis that that was something I would have to worry about."
Children's Mercy did not respond to a request for comment from USA TODAY. But the hospital shared the following statement to its Instagram account on Oct. 20:
"We have learned that ACA Marketplace coverage will change effective on Jan. 1, 2027, and we know families have questions and concerns about what this may mean for their child’s coverage," the post reads. "Children’s Mercy wants to participate in ACA Marketplace networks serving our area. However, the health plans have chosen not to include Children’s Mercy as an in-network provider. This was not a decision made by Children’s Mercy."
The statement said families should contact their insurer to understand their coverage and available options, or the Kansas Department of Insurance or Missouri Department of Commerce and Insurance "to advocate for better pediatric insurance coverage."
Do families have other options?
Finding another hospital that will take ACA coverage isn't realistic, Jackson said.
"That's the only hospital we can go to for treatment," she said, adding that the other nearest hospital that has the treatment her son needs is nearly 200 miles away. Kids like Elijah need to be able to get to their doctors on a moment's notice in case of emergencies, she said, so being a four-plus hour drive from care isn't ideal. "There's no other options."
Jackson told USA TODAY that her family has the means to pay their son's medical bills out-of-pocket − something most families can't afford. A June survey from West Health-Gallup found fewer than half of adults said they could afford health care, medical appointments and prescriptions, and experts say more and more families can no longer afford surging ACA coverage plans. Jami Woods, another parent of a child who receives care at Children's Mercy Hospital, said her daughter's hip surgery scheduled for May 2027 will likely cost $200,000 out of pocket. Her family can afford that this time if they're forced to, she said, but she can't fathom being uninsured indefinitely. Her daughter, Katie, has West syndrome and spastic quadriplegic cerebral palsy. She needs around-the-clock care and will for the rest of her life.
"Katie deserves our mental capacity to be able to support her," Woods told USA TODAY, adding that navigating medical insurance systems feels like a full-time job. "And not be like, 'Hey, I need you to sit over here and be quiet because I've got to sit here on this call and figure this out.'"
Neither Woods nor her husband qualify for health insurance through work, as they've both adjusted their work to contract positions so they can tag-team full-time caregiving support for Katie. They're doing well, financially, and have a nest egg saved up for Katie's future care expenses as she transitions into adulthood. But if they use that money now on care that health insurance should be helping with, they aren't sure what Katie's future will look like.
"She doesn't deserve to have her resources depleted for her future in this way," Woods said.
Speaking up, spreading awareness
Jackson said this isn't the first time her ACA insurance has gone out of network for Children's Mercy Hospital. Each time their insurance company dropped out of the marketplace, she said, she simply moved to a different Children's Mercy Hospital-eligible plan. So when she got notice that Medica was leaving the marketplace, "it wasn't a red flag." She didn't think it was possible, or legal, for Children's Mercy Hospital to not have a single ACA option for families.
Colin Woods said his family had the same experience, switching insurers nearly every year. So the letter from Medica saying their plan wouldn't be available in 2027 wasn't a surprise. But when he started looking for other ACA plans that would cover care at Children's Mercy, he couldn't find any.
The Woods went through with scheduling Katie's hip surgery for the spring, confident another insurer would take up ACA coverage for the hospital. A week later, they found out there would be no coverage for Katie in 2027.
Katie's hip surgery is necessary but will be painful and have a long recovery period, Woods said. But hospital stays are expensive. He doesn't want to be in a situation where they don't have coverage and are "trying to get out of the hospital to save $50,000 when she's in pain."
"I don't want that to have to enter into our logic," he said.
While they wait for insurers and Children's Mercy to hopefully strike a deal before the new year, the Jackson and Woods families are trying to think outside the box. Jami Woods said she's considering going back to school for at least six credits a semester to secure health insurance for her family.
"I don't necessarily want to take two random courses," she said. "We're literally looking at all options to get her what she needs."
Jackson and her husband are considering going back to work for the same reason. Leukemia treatments typically last about two-and-a-half years, Jackson said, and Elijah has about a year left of treatment including chemotherapy and spinal taps, which out-of-pocket will cost hundreds of thousands of dollars.
"I have two friends that have offered to hire me and my husband if worse comes to worst, so we can be on their group plan by the beginning of the year," she said. If it turns out those group plans aren't in-network for Children's Mercy, either, "we will go get a job at Costco, or something like that. We're going to have to."
But Jackson won't go down without a fight, and she's hoping that spreading awareness on social media might make a difference.
"I have the privilege to be able to fight when all these other families don't," she said. "I feel lucky that I'm able to do that."
Madeline Mitchell's role covering women and the caregiving economy at USA TODAY is supported by a partnership with Pivotal and Journalism Funding Partners. Funders do not provide editorial input.
Reach Madeline at memitchell@usatoday.com and @maddiemitch_ on X.
This article originally appeared on USA TODAY: Her son needs cancer treatments, but there's a big problem brewing at his hospital
