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2:42 am
Mon August 26, 2013

Kids With Costly Medical Issues Get Help, But Not Enough

Originally published on Mon August 26, 2013 8:56 am

Katie Doderer is a very poised 15-year-old with short blond hair and a wide smile. She's a straight A student who loves singing, dancing and performing in musicals.

This could be considered something of a miracle.

"I have a complex medical condition known as congenital central hypoventilation – blah—syndrome. CCHS," Katie explains, stumbling on the full name of her malady. "Basically my brain doesn't tell me to breathe. So I am reliant on a mechanical ventilator."

She also has a pacemaker to control her heart rate, and she has lupus. And though CCHS is very rare – Katie is one of only 700 children in the world diagnosed with it – she is part of a growing segment of the population that the health care industry calls "medically complex children."

More than 2 million children in the U.S. are born with multiple chronic illnesses that often require frequent trips to the hospital. Problems include cystic fibrosis, muscular dystrophy and cerebral palsy, among many other diseases. As medicine has advanced, more very sick children survive past infancy, and even thrive.

The number of medically complex children is growing at a rate of about 6 percent a year, according to the Children's Hospital Association. And that comes with a heavy price tag for state and federal budgets.

Katie's care has been expensive, but her family is in a better position to deal with the challenges than most: Her mom is the CEO of Arkansas Children's Hospital.

"Katie hit a million [dollars] in her first year of life," says Marcy Doderer, Katie's mother. Katie used to require 24-hour nursing; now the nurse only comes at night, but it still costs almost $75,000 a year, by Marcy's estimate. It's a service that most private insurance doesn't cover. It is, however, paid for by Katie's Medicaid coverage—even though the family is well off.

"The stereotypical image that comes to mind is a very poor family with a child on Medicaid," says Marcy. "But it is important to know that in most states there's some sort of program that is there to supplement private health insurance for a truly medically complex child."

The sickest 2 million kids account for about 40 percent of Medicaid's total spending on children. Many of these children have a combination of private insurance and Medicaid, and it can be challenging to coordinate care and coverage. Marcy Doderer, who until recently was the CEO of the children's hospital in San Antonio, Texas, acknowledges that her job gives her family an advantage.

"I know how to navigate the system," she says. "I know how to find ways to get what my child needs that the average family would never know how to do."

Still, Marcy has seen first hand all the ways that the medical system can fall short for patients like Katie. She says Katie's care is often scattershot.

"In our current health system in San Antonio there are no links between the medical records of the different specialists," Marcy says. "There is not a single person other than my husband really who is paying attention to how care is coordinated for a kid like Katie."

Katie's dad, Mark Doderer, is her main caregiver. He has traveled with her more than 20 times to Chicago to see the doctors who specialize in Katie's rare disease. But Katie's Medicaid doesn't travel with them: The hospital in Chicago doesn't accept the Medicaid Katie got from Texas. And that care isn't coordinated. Mark says the doctors in San Antonio and Chicago often want to do the same test twice, like an EKG.

"They'll just repeat it, because they want the EKG done according to their rules and that it's in their records," he says. "What a waste."

Mark remembers a mix up between doctors that ended with Katie being prescribed a medication that interfered with another she was already on. The result could have been fatal. Marcy Doderer says hospitals can do better.

At the Children's Hospital San Antonio, Doderer says she's tried use her experience as a mom to improve things by focusing on a child-centered team approach, even hiring special care coordinators in charge of managing care for each of the sickest kids. The Children's Hospital Association has been lobbying Congress to help create a special network within Medicaid to coordinate care between hospitals, too.

"Our hope is to create legislation that would identify these kids in a separate bucket, so to speak, so you can build bridges between the state Medicaid programs to make care more seamless for kids who have to cross state lines," Doderer says.

Improving the communication between doctors and hospitals to limit repeat tests and unnecessary procedures for medically complex children could save Medicaid $13 billion over 10 years, according to a recent study by CHA. But Matt Salo, who runs the National Association of Medicaid Directors, worries that while making care more efficient is a worthy goal, it could come at a price.

"It's important to think about health care spending not as competing for infinite dollars where everyone gets everything they want," says Salo. "Health care is, unfortunately, a limited pool of funds. So carving out additional dollars for one group may well mean that another group gets less—low-income frail seniors or individuals with physical disabilities."

In her new role running the children's hospital in Little Rock, Doderer says she'll continue her push for better care. For Katie, it means a new school, new friends and a new set of doctors.

"She has challenging days," Marcy says of Katie. "It's not easy walking around with a ventilator, and you don't get to go swimming or have normal sleepovers with your friends. But she has traveled internationally, she snow-skis, she plays the harp."

Up next? Learning to ride a bicycle, ventilator and all.

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This story is part of a collaboration between NPR and Kaiser Health News.

Copyright 2013 NPR. To see more, visit http://www.npr.org/.

Transcript

RENEE MONTAGNE, HOST:

This is MORNING EDITION from NPR News. I'm Renee Montagne, good morning.

DAVID GREENE, HOST:

And I'm David Green.

Today in Your Health, we're looking at a troubling new trend in teenage smoking. But first, costly childhood diseases like cystic fibrosis, muscular dystrophy and cerebral palsy. As medicine gets more advanced, we're able to save more of the young people who have those diseases. And that's good news, but its news that comes with a hefty price tag. Children's Hospitals say they have a plan to cut those costs by actually making their care better.

Jenny Gold has this profile of one young girl with a very rare disease and a mom in a unique position to help her daughter, as well as kids like her.

JENNY GOLD, BYLINE: Katie Doderer is 15 years old. Short blond hair, wide smile and very poised. She's a straight-A student who loves singing, dancing and performing in musicals.

KATIE DODERER: (Singing) In my own little corner in my own little chair, I can be...

GOLD: This could be considered something of a miracle.

DODERER: I have a complex medical condition known as congenital central hyperventilation syndrome. - CCHS. Basically, my brain doesn't tell me to breathe. So I'm reliant on a mechanical ventilator.

GOLD: It's attached to her windpipe by a long blue plastic hose. She's one of only 700 kids in the world with CCHS. And she also has lupus. I asked her what all that medical care is like.

DODERER: In a word: annoying.

GOLD: Another word might be expensive.

MARCY DODERER: Katie hit a million dollars in her first year of life.

GOLD: That's Katie's mom, Marcy Doderer. She says Katie used to have a nurse with her 24 hours a day. Now the nurse only comes at night but is still costs almost $75,000 a year. It's a service that most private insurance doesn't cover. But it is paid for by Katie's Medicaid coverage even though the family is well off.

DODERER: The stereotypic image that comes to mind is a very poor family with a child on Medicaid. But it is important to know that in most states, there is some level of wraparound program that is there to supplement private health insurance, for a truly medically complex child. It is based on the child's assets, not the parents' assets.

GOLD: The sickest two million kids account for about 40 percent of Medicaid's total spending on children.

Now Marcy Doderer isn't just Katie's mom. She's also a hospital CEO. Until recently, she ran the Children's Hospital of San Antonio in Texas. She's seen the problems first-hand; standing around the ICU, waiting hours for a doctor that's late; all the ways that the medical system can fall short for patients like Katie. For one thing, Marcy says Katie's care often seems scattershot.

DODERER: In our current health system in San Antonio, there are no links between the medical records of the different specialists. There is not a single person - other than my husband, really - who is paying attention to how care is coordinated for a kid like Katie.

GOLD: Katie's dad Mark Doderer has traveled with her more than 20 times to Chicago, to see the doctors that specialize in Katie's rare disease. But their Medicaid doesn't travel with them. The hospital in Chicago won't accept the Medicaid Katie gets from Texas. Mark says the doctors often want to do the same test twice, like an EKG.

MARK DODERER: And if we've done it in San Antonio, then they'll just repeat it because they want the EKG done according to their rules and that it's in their records.

GOLD: One time, Mark says a mix up between doctors ended with Katie being prescribed a medication that interfered with another. It could have been fatal. Marcy Doderer says hospitals can do better.

DODERER: Hospitals are very complex organizations. You know, you can fall into a silo-ed mentality at times, where radiology is just thinking about radiology and not worried about what the intensive care unit is thinking.

GOLD: Doderer says she uses her experience as a mom to improve things at her hospital, by focusing on a kid-centered team approach. The Children's Hospital Association has been lobbying Congress to help create a special national network within Medicaid to coordinate care between hospitals too. Marcy Doderer is on their board.

DODERER: Our hope is to create legislation that would identify these kids in essentially a separate bucket, so that you can build bridges between the state Medicaid programs to make that care a bit more seamless for those children who have to cross state lines.

GOLD: If doctors and hospitals can communicate better, Medicaid could actually save $13 billion over 10 years, according to the Children's Hospital Association. But Matt Salo, who runs the National Association of Medicaid Directors, worries that their plan could come at a different price.

MATT SALO: Health care is unfortunately a limited pool of funds. So carving out additional dollars for one group may well mean that another group gets less.

GOLD: Recently, the Doderers moved from Texas to Little Rock, where Marcy Doderer was named the new CEO of the Arkansas Children's Hospital. She says she'll continue her push for better care there. For her daughter Katie, it means a new school, new friends and a new set of doctors.

DODERER: It's not easy walking around with a ventilator and it's not fun that you don't get to go swimming and you don't get to have normal sleepovers at your friends. But, she has traveled internationally, she snow skis, she plays the harp.

GOLD: Up next? Learning to ride a bicycle, ventilator and all.

For NPR News, I'm Jenny Gold.

GREENE: That story was produced by our partner, Kaiser Health News, a nonprofit news service. Transcript provided by NPR, Copyright NPR.

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