Iowa family fights for Medicaid for daughter

'Medicaid has been a lifesaver for us'

Ellie Schmidt
Ellie Schmidt

On the same day U.S. senators plan to release a revised version of their proposed health care bill, one Iowa family and physician will make their case to lawmakers — through the eyes of a little girl — for threatened Medicaid funding.

Center Point residents Kevin and Heidi Schmidt, along with their nine-year-old, Ellie, on Thursday are scheduled to meet with Iowa Sens. Joni Ernst and Chuck Grassley and U.S. Rep. Rod Blum as part of a national push to address pediatric health care needs through a Speak Now for Kids Family Advocacy Day.

University of Iowa Stead Family Children’s Hospital pediatric cardiologist Thomas Scholz is among a team of providers who have cared for Ellie, born with hypoplastic left heart syndrome. He’ll be with the family Thursday on Capitol Hill, arguing for sustained Medicaid funding.

The trip won’t be Scholz first to Washington, D.C., for the national advocacy day as he participated in 2016 as well. But with so much national discord around health care, this year feels different, Scholz told The Gazette.

“The acuteness of our conversation tomorrow, especially with the revised edition of the senate version of the (Affordable Care Act) replacement — we’ll be reading about that feverishly in the morning,” Scholz said on Wednesday.

Both House and Senate proposals to replace former president Barack Obama’s signature health care act have included cuts to children’s Medicaid funding.

The House’s American Health Care Act would slash Medicaid funding for kids by at least $43 billion over 10 years by eliminating the program’s open entitlement and replacing it with a capped system that limits Medicaid funding to states, according to an Avalere Health report.


For Iowa, according to the report and UI Health Care, that could result in funding losses totaling $283 million by 2026.

“It’s a topic that’s front and center,” Scholz said. “It has such a huge impact on not only the Schmidts, whose daughter has complex congenital heart disease and massive medical bills that could never be covered by the family, Medicaid support for families like them and other kids with complex medical conditions is essential for the kids and families of Iowa.”

More than 40 percent of children rely on Medicaid — a number that’s grown as scientific advances have enabled more children to survive serious illnesses. Of more than 30 million children enrolled in Medicaid, at least two million have complex medical conditions such as cancer or heart conditions.

Ellie Schmidt is one of those children. In her nine years, she’s endured three open-heart surgeries, 10 cardiac catheterizations, a feeding tube, daily medications, about 100 days in the hospital, physical and occupational therapies, and numerous labs, X-rays and other procedures.

Her health care expenses reached $1 million before she turned four. With the help of UI Stead Family Children’s Hospital staff, her parents applied for Medicaid and now rely on it to help cover medical expenses not provided for through private health insurance.

“Medicaid has been a lifesaver for us,” Heidi Schmidt said in a statement.

She noted Ellie always will need doctor visits, meaning she’ll always be paying medical bills.

“We are fighting to keep her health coverage so she can be healthy,” Heidi said.

ACA provisions that in the past few years have enabled families to achieve reliable coverage without worries over pre-existing conditions or coverage caps have been “huge,” according to Scholz.

“Especially for kids like Ellie Schmidt,” he added.

If new legislation results in lifetime coverage limits, children might miss follow-up appointments or put off care until they are “devastatingly ill,” Scholz said. When they finally present with symptoms, they might be critically sick with a medical condition that could have been caught.


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Families who max out their coverage could be forced to pay out of pocket, eventually resorting to “charity care” — when they seek care at a hospital but can’t pay. That puts the financial burden back on the facilities and the communities in which those health centers operate.

“For a state like Iowa, that has a big impact on the finances of the rural hospitals where there’s maybe higher percentages of individuals now on Medicaid who were previously uninsured,” Scholz said. “That unreimbursed care, or charity care, has a big financial impact on the health of the rural hospitals.”

Children represent nearly half of all Medicaid enrollees, but less than 20 percent of program costs. That means a big cut to Medicaid disproportionately could affect them, according to consulting company Avalere Health. The same is true for the nation’s approximately 200 children’s hospitals — such as University of Iowa, according to Mark Wietecha, president and chief executive officer of the Children’s Hospital Association, which is sponsoring the event and the Schmidts’ trip to Washington.

“Dramatic cuts to Medicaid as proposed in the House and Senate bills endanger the continued viability of our nation’s children’s hospitals,” Wietecha said.

“As a matter of public policy, we should not be attempting to fix our national budget problems by cutting children’s health care.”

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