Chaos and heartbreak for families dropped by Children’s Hospital

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Gunnar Herndon and his brother, Gibson, watch an iPad during one of Gunnar’s breathing treatments. Gunnar, who has cystic fibrosis, and Gibson, who has cerebral palsy, were patients at Children’s Hospital in Birmingham. 

Pamela Warrington found out on Tuesday morning, March 7, that Children’s Hospital of Alabama had dropped Mississippi Medicaid—and with it, her son, Sam.

Curled up on her living room sofa last week, Warrington recalled seeing the Children’s Hospital caller ID flashing on her screen that morning. She figured the hospital was confirming Sam’s appointment for the next day. So she stepped into the tiny bathroom off of the preschool class she teaches. On the other end was a receptionist from her son’s oncology clinic. But she wasn’t confirming Sam’s appointment.

“I felt like I had been punched in the stomach,” Warrington said.

Sam, who is 4, has leukemia and cystic fibrosis. In a couple of hours, mother and son were supposed to get in the car and make their monthly drive to Alabama for his chemotherapy. Their suitcases were already packed.

At two hours, the trip from their home in New Albany wasn’t convenient, but Sam had been traveling to Children’s for more than half his life. Every doctor he saw knew him by name. They even dressed up for his birthday. So over the past few years, the Warringtons had settled into a comfortable routine.

Pamela, Sam and Ryan Warrington in their home in New Albany.

Sam is Pamela’s first and only child. She and her husband, Ryan, adopted him the day he was born. He’s half Mexican, and his big brown eyes and curly dark hair stand out against his fair-haired parents.

“Who gave you to us?” Pamela asks him.

Sam grins and looks up, shyly. He knows this routine. “God did.” 

Three months after Sam came home they learned he had cystic fibrosis. Treatments began soon after. Then at age two, life threw another curve ball: leukemia. An oncologist at Children’s told Pamela that Sam is the only leukemia and cystic fibrosis patient he has treated in his 30-year career.

For parents of sick kids, security is fleeting. A rush of optimism over a good scan can wither with a late night fever. Doctors, especially ones delivering bad news, are easy to second-guess. So when parents find something they trust, they cling to it.

For Warrington and many other parents who spoke to Mississippi Today, Children’s Hospital had been a rock. One phone call sent her reeling yet again.

“I’m sitting there with 16 three-year-olds outside the door, (and I’m) screaming and crying in this little bathroom, trying to keep it together,” Warrington said. “Because I hadn’t known what it was about. I thought they were calling to verify his appointment.”

A short time later, Warrington received another call and with it, a brief reprieve: Sam’s oncologist told her to come anyway. Children’s would cover Sam’s appointment the next day, gratis.

“But after that we had to figure something out.”

Blindsided

Cystic fibrosis, which causes a thick buildup of mucus in the lungs, pancreas and other organs, is a chronic, terminal illness. Recent developments have nearly doubled life expectancy; patients today routinely live into their late 30s.

But the increased life expectancy comes at a cost. Caring for cystic fibrosis can run from $15,000 a year to $300,000, depending on drugs and treatments. Many families have private insurance, but even that can leave thousand-dollar gaps. As a result, the Cystic Fibrosis Foundation estimates that 45 percent of patients with the disease receive some form of Medicaid.

Last year, approximately 300 Mississippi Medicaid patients went to Children’s Hospital for care, according to the Division of Medicaid, for everything from emergency room trips to feeding tube adjustments.

Although Children’s sits across the state line, it’s nearly two hours closer to New Albany than Batson Children’s Hospital in Jackson, Mississippi’s only pediatric cystic fibrosis clinic. Plus, Pamela says, Children’s came highly recommended from other cystic fibrosis families.

Warrington estimates about 20 Mississippians go to the Children’s pulmonary center.

These patients and their families form a small but tight-knit group of advocates, joined by geography and Facebook and the heartbreaking desire to see their children grow up.

Many of the parents say they have logged dozens of hours on the phone and written countless emails: to Medicaid, to elected officials, to doctors, social workers and even the CEO of Children’s Hospital.

Clay and LaNell Anthony. Their 14-year-old son, Haddon, has cystic fibrosis.

“I’m just trying to identify the bad guy,” said Clay Anthony of Blue Mountain, whose son Haddon, 14, also has cystic fibrosis.

Because when your sick child can’t get the care you think he needs, there’s one explanation: Someone is doing something wrong.

Children’s Hospital of Alabama says the decision to stop seeing Mississippi Medicaid wasn’t an issue of right or wrong; it was a financial one. In a March 10 statement, Children’s said it was not able to “successfully negotiate provider agreements with satisfactory terms.”

Although Children’s Hospital stopped accepting Mississippi Medicaid beneficiaries on March 1, they did not publicly confirm this until nine days later.

Mississippi’s Division of Medicaid says they were just as blindsided as the families. In fact, Medicaid first learned of Children’s decision on March 8, only after a parent called to say the hospital told her they had dropped Mississippi Medicaid.

“It would be fair to say we were awfully surprised,” said Erin Barham of Mississippi Medicaid.

Children’s explained to Mississippi Today last week that their priority had been focusing on the “thoughtful transition of care for these patients and their families.”

But many of these families say they’ve felt more like an afterthought.  None of those family members who spoke to Mississippi Today found out about Children’s decision to drop Mississippi Medicaid until the policy had been in place nearly a week, and few found out directly from the hospital, itself.

On March 6, Beth Cochran was on I-20, two hours into the more than three-hour drive from Waynesboro to Children’s when a nurse called to say they wouldn’t take Medicaid for her son’s appointment that day. Justin, 11, also has cystic fibrosis, and Beth knew she and her husband, who works two jobs, would now get Medicaid’s portion of the bill. But she says “we were already halfway to the hospital.” They’re waiting on the bill.

Clay Anthony’s wife, LaNell, found out about Children’s decision when a fellow cystic fibrosis parent posted the news on Facebook.

Megan Herndon found out from LaNell. She lives in Mooreville, and her sons, Gunnar and Gibson, both 4, go to Children’s Hospital regularly, Gunnar for cystic fibrosis and Gibson for cerebral palsy. After hearing from LaNell, Herndon called a social worker at the pulmonary clinic where Gunnar is a patient, and she confirmed the news.

Gibson’s clinic still hasn’t contacted her.

Haddon Anthony competes in a cross country meet for Tupelo Christian Prep

‘An excruciating disease’

LaNell Anthony wakes up Haddon at 5:30 a.m. every day for his first breathing treatment.

He straps on a $16,000 airway clearance vest and coughs. Again. And again. And again. For an hour and a half, the vest shakes his chest, loosening phlegm. In the mornings, he watches Sportscenter. At night he does homework, clicking away on his laptop while his upper body shakes.

Haddon takes as many as 30 pills a day, just to eat. On vacations, his vest travels in the Anthonys’ carry-on. Sam Warrington has as many as four breathing treatments a day if he’s in the hospital. Justin Cochran has six, even when he’s healthy. And behind each kid is a parent filling the prescription or holding the nebulizer, or a sibling drumming his fingers on a table, waiting for his brother to finish so they can get to school.

“And I think that’s the hard part with what’s going on at the hospital right now. I’m tired. I’m already really tired,” Anthony said. “CF is an excruciating disease. It’s morning, noon, and night.”

Children’s Hospital of Alabama is not the only area hospital that treats cystic fibrosis. Batson in Jackson and Le Bonheur Children’s Hospital in Memphis have accredited cystic fibrosis centers. And Memphis, like Birmingham, is just a two-hour drive from Northeast Mississippi.

But the center at Children’s Hospital is among the best in the country. Data from the Cystic Fibrosis Foundation, which provides accreditation, tracks the health outcomes of patients at each center. Children’s rates above the national average in three out of four categories. Le Bonheur rates above the national average in two. And Batson rates above the national average in one.

Batson is also nearly four hours away for many of the families in the Tupelo area, which turns a day trip into an overnight.

“That’s a hotel room you’re paying for, another missed day of work and school,” LaNell Anthony said.

That difference may not seem significant. But the Anthonys, who took Haddon to Le Bonheur for the first seven years of his treatment, say he has improved dramatically since he moved to Children’s four years ago.

Haddon Anthony after his cross country team won the state championship in November.

“He went from just getting through life to winning the state championship in cross country,” Clay Anthony said. “They explain the medicine better, they explain the routine better. He sees the same doctor every time. At Le Bonheur, we never saw the same doctor. It’s just a comfort level.”

The Cystic Fibrosis Foundation said interruptions in care can be devastating for patients, and recommends transitions happen slowly.

“Since cystic fibrosis is a complex disease. It requires a team approach … (This) means that health care professionals work together in partnership with the patient and caregiver, developing an established relationship and deep understanding of an individual’s medical history and needs. Ideally transitions in care … shouldn’t happen abruptly, but instead should be a planned process over time,” said Jessica Rowlands of the Cystic Fibrosis Foundation in a statement.

Talking about leaving Children’s, Pamela Warrington cycles through disbelief, anger and sadness. She admits she’s grieving, in a way. If cystic fibrosis is a disease that involves the whole family, in many ways, everyone involved with the disease becomes family.

“That’s why all this has been so hard to wrap my head around. Because I know how (Children’s) is about their families. They take care of us, too,” Warrington said.

“And maybe that’s true at UMC. But we’ve already got a family. Why do we need another one?”

Gunnar Herndon with Chloe Wade, his nurse at Children’s Hospital in Birmingham.

Herndon’s Instagram account is proof. Recent photos include Gunnar on a tractor; Gunnar and Gibson with their baby cousin; Gunnar doing his first pulmonary function test and grinning with the technician afterwards.

The Herndons also moved to Children’s from Le Bonheur two years ago.

“And we (immediately felt), ‘Okay, this is exactly where the Lord has called us to be. Because these people, along with Jesus Christ, I give them complete credit for Gunnar being where he is today.”

Herndon pauses and shakes her head.

“How could they not want to treat us and then we say such great things about them?”

Not an ‘average’ Medicaid family

Sam Warrington laughs at a Disney Junior show with his dad, Ryan. 

Sam, Pamela and Ryan Warrington live in a red brick house with a neat lawn, faded to the color of straw in mid-March. The homes surrounding it are cut from the same cloth, with open porches and young trees. Big Wheels and Cozy Coupes peek out of garages.

This is not where most people picture a typical Medicaid family. But even among cystic fibrosis patients, no family is typical.

Although both Sam Warrington and Haddon Anthony have Medicaid, their prospects for care are quite different. While Medicaid is Haddon’s secondary insurer, it’s Sam’s only insurer.

Although Ryan and Pamela have Cigna coverage through Ryan’s job, it doesn’t cover Sam. This means most doors of care at Children’s are closed to Sam. Only the emergency room, which is not allowed to turn anyone away regardless of insurance status, is an option.

But cystic fibrosis and leukemia require rigorous maintenance and monitoring, something even the best emergency rooms can’t offer.

Like Justin Cochran, Haddon can still go to Children’s — as long as his parents are willing to pay for what Blue Cross doesn’t cover. And LaNell Anthony says she’s considering it, even if it means putting her family in debt.

“I will pay medical debt for the rest of my life, and I will just die with medical debt. I think that’s just the reality. You do what you have to do to get the best care for your kid,” she said.

Finding ‘the bad guy’

Although many parents are effusive in their love for Children’s, they’ve started to compartmentalize these feelings. There are the doctors and nurses who they say gave their children a new lease on life; and there are the administrators who they feel are leaving their kids for dead.

“The thing that’s been so absolutely crazy is there was no warning,” Herndon said.

Topping that second list has been Children’s Hospital Chief Financial Officer Dawn Walton.

Herndon called Walton as soon as she heard they had dropped Medicaid. To her surprise, Walton returned her call. But what surprised her more, she said, was Walton’s response.

“I’m crying on the phone with her, so hard I can hardly get words out, and she says it was in the best interest of our hospital, from a business aspect,” Megan said.

“I said, ‘Knowing that the CF center at Children’s is one of the top-ranked in the country,  where would you take your child?'” And she swapped it back at me. She said, ‘What exactly do you think we should have done differently?”

For many parents, the answer is obvious. They say they would have liked some notice.

“Heck, a week would have been nice,” Herndon said.

In some ways the Anthonys feel lucky. Haddon’s last appointment at Children’s was on Feb. 27, two days before the hospital’s decision to stop accepting Medicaid took effect. His next appointment isn’t scheduled for three months. So the Anthonys have more time than some to figure out payments or find alternate care.

But given the timing of Haddon’s last appointment, Clay said someone at the hospital must have known that they wouldn’t be going back there.

“And no one said not one word that this is coming,” Anthony said.

Megan Herndon holds her son, Gunnar, during one of his breathing treatments. He sits through as many as seven treatments each day. 

Megan Herndon clenches a fist as LaNell Anthony speaks. “I just feel (Walton) doesn’t want our kids there.”

Children’s Hospital declined to comment on Herndon’s statement. But Kelley said that making the transition easy on families has been Children’s Hospital’s first priority.

“We want to do the best we can and be transparent in every way,” Adam Kelley of Children’s Hospital said.

Representatives from the hospital have made it clear that Children’s problems began and ended with Mississippi Medicaid’s payment history, specifically its two coordinated care companies, United Healthcare and Magnolia Health. Together these companies insure two-thirds of Mississippi Medicaid beneficiaries.

In a conversation with Mississippi Today last week, Kelley said one issue with reimbursements was that, unlike Batson or Le Bonheur, Children’s had been designated an out-of-network provider by United and Magnolia, which means neither was contractually bound to reimburse the hospital at a set rate for identical services. And, he said, they often didn’t.

“The thing I would say is that it’s very difficult to understand the requirements. Some patients are covered and others are not. Some services are covered, others are private pay,” Kelley said.

Magnolia has not returned repeated requests for comment. But a representative from United bristled at the allegations.

“We’ve paid them consistently, as we would any out-of-network provider,” said Jocelyn Parker of United Healthcare.

Mississippi’s Division of Medicaid says it takes any allegations of inconsistent payments very seriously. But it also says that prior to the decision to drop Mississippi Medicaid, Children’s had not alerted them to any specific inconsistencies. Since then it has notified them of one.

“To the fullest reasonable extent, the Mississippi Division of Medicaid will investigate any specific examples of such inconsistent payments as those are made available. Keep in mind, we cannot look into an issue if we are not aware of it,” Erin Barham said in a statement.

United has never sent the Warringtons an explanation of benefits, the statement that outlines what the hospital’s charges and what the insurer will pay. But Pamela said an incident last November should have indicated trouble was brewing.

Sam was in the hospital for sinus surgery, and Pamela said the financial counselor pulled all of Sam’s bills. She said the total reached nearly $1 million. But to her surprise, United had only paid about $100,000 at that point.

“And I felt like trash, honestly, because I felt like I owed that woman some money,” Pamela said, wiping away tears. “And I told her, ‘I need to set something up.’ And she said, ‘No, Mom. That’s not you. That’s Medicaid.'”

Maybe because of this Warrington is more sanguine about Children’s decision to drop Mississippi Medicaid. Her problem, she said, is how it has been handled.

“I am not upset with Children’s for the decision they made if Mississippi Medicaid was not paying their bills. I wish we had a little more warning about what was happening, but I understand,” Warrington said.

‘What choice do we have?’

After Pamela and Ryan learned that Children’s had stopped accepting Mississippi Medicaid, they spent the next 24 hours on their phones, searching for property in Alabama. But when Sam got wind of it, he stopped them.

“The only thing he said was, ‘Mama, I don’t want to leave our house.”

So Pamela Warrington is trying to get comfortable with making the drive to Batson.

“I went to the UMC website and looked at everything I could find about their hospital,” she said. “It’s three and a half hours to UMC. But what choice do we have?”

But for many of these families, especially those with a primary insurer that Children’s will accept, going elsewhere is inconceivable.

“It’s like taking your kid to Disney World and then asking them to get excited about Liberty Land,” said Clay Anthony.

Justin Cochran, who has cystic fibrosis, plays outside with his sister, Faith.

Justin Cochran’s dad, Anthony, talks about picking up more hours at his second job. Beth Cochran talks about getting a second job, herself. But she’s worried.

“I want to be able to see my kids,” she said.

But as the dates of their children’s follow-up appointments get closer, these parents know they will have to make a decision.

“The fact is, Dawn Walton, we don’t have time. I don’t have time for CF. We don’t have time for them to play with my kid’s health,” Clay Anthony said. “This is a progressive thing and CF has absolutely no cure, and our job, given to us by God, is to take care of our kids and keep them healthy until someone is smart enough to figure out how to fix this thing.”