Saving Derrian: 13 Investigates the battle over insurance denials

Derrian Baker sits on the bed in the nursing home. His Dad says about 15 facilities would not take Derrian because they are not equipped to deal with PWS patients.

INDIANAPOLIS (WTHR) — An Indiana couple is trying to save their son from a rare disease, but their insurance company is blocking the only hope for treatment.

It's a horrible sickness. Their son is among the children born with a genetic disorder that makes them binge on food. There's a disconnect between their brain and their stomach and it has life threatening consequences.

13 Investigates shows you the struggle up close of patients dying to eat and why the family is taking its fight to save Derrian public.

Prader-Willi Syndrome

(Photo: Dan Baker)

Laying on an emergency room bed, with an oxygen mask forcing air into his nostrils, Derrian Baker has just one thing on his mind.

"I'm hungry, can I get something to eat?" he asked.

Derrian is in the middle of a life-threatening health crisis.

A rare genetic disorder causes his body to crave food more than life itself.

Darrian's father Dan keeps the camera rolling as his son cries out to him for food.

Dan Baker wants his insurance provider to see the gut-wrenching truth about Prader-Willi Syndrome.

"I'm hungry!" Derrian cried, as a tear began to seep out of his eye and down his cheek.

Just hours earlier, Derrian visited with 13 Investigates at a northern Indiana nursing home.

At just 4 feet 11 inches tall and 385 pounds, a stroll to his room demands effort with each step.

His breathing is labored and he stops continually to try to slow down his heart rate.

"I know people look at him and say 'Why did you let him get this huge?' Believe me, if it was in our control, he wouldn't have been this size," said Debra Baker, Derrian's mother. She has experienced more than one outing filled with rude stares.

Derrian is the one in 15-thousand diagnosed with Prader-Willi Syndrome (PWS) every year.

PWS causes weak muscles, poor growth, developmental delays, temper tantrums and an insatiable appetite leading to obesity.

Patients like Derrian are missing a part of a chromosome, and the result is a loss of control where they can literally eat until their stomachs explode!

Complications from obesity, diabetes and severe respiratory problems, including sleep apnea are a constant threat on their lives.

Cycle of spiraling health crisis

Just hours after his cries for food, Derrian was in the back of an ambulance.

Soon he was comatose in the ICU. It was the second time in 3-months.

13 Investigates has learned both critical emergencies might have been avoided with some preventative care.

Last August, Derrian was accepted into a unique in-patient treatment program for Prader-Willi Syndrome patients at the only facility of its kind in the world. But Derrian's Medicaid insurance provider refused to sign off on it. Indiana-based Anthem ruled in-patient PWS treatment was not medically necessary.

"You have somebody's life that is at stake. The insurance is just standing it's ground and saying no," explained Dan Baker. He and his wife believe Anthem's denials are nothing short of a death sentence for Derrian.

"You know whether he lives or dies it's really not their concern," said Debra.

Derrian's doctors at the IU School of Medicine believe the comprehensive treatment is crucial.

They wrote a 3-page letter to Anthem saying "It is imperative that Derrian be strongly considered for admission into... (the) Prader-Willi Syndrome treatment program at The Children's Institute of Pittsburgh."

The IU doctors know Derrian's case well. They treated him for 50-days last fall for respiratory failure. He was on life support for nearly 3-weeks of that time.

"It was scary and I was just broken," explained Debra reliving the moments doctors told her they would have to intubate Derrian. It was a life or death decision because Derrian's airways were small. "I didn't know what to say, what to do," she said talking about the emotional turmoil she experienced.

The cost of that 50-day hospital stay in the intensive care unit topped more than $648 thousand dollars. Over the last 6-months Derrian’s emergency hospital stays and care total nearly a million dollars! Six months at the Children's Institute would cost around $250-thousand dollars, but the most extensive program at the Prader Willi Unit only goes 3 months.

Preventative care could have possibly saved a half million dollars and helped Derrian to improve his health.

Family challenges of living with PWS

Derrian was diagnosed with PWS when he was 3 by Dr. Elizabeth Mango, a Merrillville neurologist who was curious about Derrian's lack of muscle tone and small features.

Dan Baker said one day Dr. Mango called he and his wife in to her office to show them something she had come across. It was information about Prader-Willi Syndrome. That was the first time they had ever heard of it.

The disorder was first identified in 1956 by Swiss pediatricians Andrea Prader, and Heinrich Willi and Internist Alexis Labhart.

Dan Baker says his son went from having no appetite at birth to the opposite extreme as a preschool child.

"One day I saw him getting some food out of the garbage can, and I said 'something is wrong,'" Dan Baker told 13 Investigates. It was the early stages of Derrian's obsessive eating. Not a whole lot was known about Prader-Willi Syndrome in Indiana at that time.

Controlling food for a young child is one thing, but the older Derrian got, the Bakers discovered he was willing to do just about anything to eat.

He broke the locks on a garage freezer and frozen food became a secret stash.

By the time they figured it out, it was too late.

"It was gone," said Debra Baker, talking about the food that had been put away for later use.

"Nothing was there," chimed in Dan.

"I stood there and I started to cry because I'm like 'this is too much,'" he recalled.

It was one of the family's low points.

Inside the Baker's home, Derrian's mother showed 13 Investigates how they wrap bicycle chains around the handles of their refrigerator to keep him out of it.

Locks also protect the food pantry.

Just below the new locks, there are old holes, evidence of when Derrian's desire was stronger and won out.

"He shook it until he broke it," said Debra, demonstrating how Derrian used his strength to break the barriers.

Down the hall, walls leading up and down two different staircases show the scars when Derrian can't get what he wants. He admitted he had punched holes through the walls at home.

Hope vs helplessness

At 26 years old, Derrian seems more like a 14-year old most of the time. He likes basketball and wants to be social like he was in high school before gaining 100 pounds in a single year.

13 Investigates asked Derrian if he ever feels he gets enough to eat.

"No," he said very quickly.

"How long has it been like that?" questioned 13 Investigates.

"I don't know," he responded.

He knows he has Prader-Willi Syndrome and believes the unit at The Children's Hospital of Pittsburgh could change his life. He and his parents have watched videotape of other patients who experience renewed hope due to the in-patient treatment.

13 Investigates wanted to see the facility first hand and made the trip to Pittsburg to check it out.

The first day our crew met 21-year-old Sadie. She is 6 weeks into the program and had already dropped more than 20 pounds!

15-year-old Russell has had success too.

On the second day of our visit he struggled to stay on his physical therapy schedule. He checked out for a while, and opted to sit in a sand weighted chair designed to handle large amounts of weight. There he leaned his head back on the wall, closed his eyes and shut out the world around him. There was no outburst or violent behavior that is sometimes characteristic of the disorder. After about 15 minutes and motivational talk from the instructor, Russell sat up and then got back to exercising.

Why experts say in-patient treatment works

"It's not an easy syndrome to understand," said Amy McTighe, the program director of the PWS unit in Pittsburgh.

"It saves lives!" she said without hesitation. "Right now our success rate is at 98%."

Patients in the 8-bed Prader-Willi unit are in a food safe environment, meaning they can't get food until set meal times.

Just 600 calories a day, that's it.

And when the trays come so does the stress level.

It's why each patient eats alone. It's time to themselves and they all seem to savor it.

"I'm getting used to it now because I don't get hungry like I used to do," said Sadie, who was just days from wrapping up her treatment to go home. Parents also receive training to help maintain an environment of success for the patients once they leave the facility.

Most of the day is focused on physical, occupational and psychological therapies, all designed to get PWS patients moving, more healthy and happy.

Our cameras captured patients from 12 years old to 51 smiling and singing the unit welcome song. Miss Haley, the music therapy instructor told 13 Investigates the patients thrive with structure.

She says the universal language of music teachers them creativity, self expression, self esteem, empowerment and social skills.

Anthem rules in-patient treatment medically unnecessary?

Could this program help someone as sick as Derrian?

"Absolutely!" responded McTighe. "Patients come here in extreme crisis and large, having very large BMI's. Many of our patients do not, are not hospitalized again, which is a huge savings for the insurance company," she added.

"Why would an insurance company balk at that?" questioned 13 Investigates.

"They feel that they can get physical therapy or occupational therapy or a lot of therapies that we're providing in an outpatient setting," explained McTighe.

It's exactly why Anthem said it denied Derrian a bed at the Children's Institute.

No one from Anthem would speak on camera, but a spokesman told 13 Investigates, "the support (provided) is the best that Anthem can offer."

In a written statement Anthem further defended its position.

"We have continuously provided in-network coverage for the treatment and co-morbidities associated with Mr. Baker's disease, including stays at Indiana hospitals. Similarly, his treatment at care facilities focused on individualized physical and occupational therapy have all been covered..." read the statement provided by James Freeman, Director of Anthem's Medicaid Public Relations for the company's North Region.

The problem is patients like Derrian are sent to nursing facilities across the state that just can't handle his complex needs.

Derrian's father revealed at least 16 Indiana nursing homes had already turned Derrian away.

Dan Baker said all his family can do now is pray that Derrian will stabilize and that Anthem will change its policies.

"For every day you spend in ICU, it's equivalent to 7 days; 5 to 7 days of therapy," Dan Baker told 13 Investigates. He said doctors who cared for his son shared that comparison.

"It is so frustrating and you kind of lose hope you know, " said Debra Baker trying to find the words to share her disappointment. "You lose hope in people sometimes. You want to give up," she said shaking her head as her own words sank in.

"That's our son. We believe in a God who created him and so we have him. We're going to fight for his care, we're going to fight for those things that he is rightfully due as a human being and as a citizen of the United States of America," Dan Baker said before he stood up to take a stroll with his son.

Derrian is back at home.

His parents told 13 Investigates Derrian was moved to a traditional Medicaid plan days ago but an Anthem spokesman denies that.

It's an important distinction because traditional Medicaid has approved in-patient treatment at the Children's Institute in some cases.

Anthem's full statement:

Anthem Blue Cross Blue Shield is committed to providing all of its members with the services and support they need to manage their healthcare needs. We have continuously provided in-network coverage for the treatment and co-morbidities associated with Mr. Baker's disease, including stays at Indiana hospitals. Similarly, his treatment at care facilities focused on individualized physical and occupational therapy have all been covered and in-home care is readily available to Mr. Baker.

While there is, unfortunately, no preventative or curative treatment for Prader-Willi Syndrome, Anthem Blue Cross Blue Shield has a team dedicated to providing the best long-term health management and care coordination for Mr. Baker.

Additional Questions:

How is this different from the out-of-state services we may provide to a member who needs treatment for a drug addiction?

Out-of-state services for a member who needs treatment for drug addiction would be considered only if the medically necessary services were not available through an in-state provider. In Mr. Baker's case, it was determined that there are in-state services available to meet his medical needs.

What specific services would be available with in-home care?

In-home services include home nursing care, home health aide services as well as physical and/or occupational therapy services. We would work with Mr. Baker and his family to determine exactly which home services would be needed.

Does Anthem have a PWS specialist on-staff that was consulted for this particular request?

We have physicians specializing in both behavioral health and physical health, including physicians with experience caring for patients with Prader-Willi Syndrome. The physicians thoroughly reviewed Mr. Baker's request as well as his current healthcare needs. Based on our review, as well as input from physicians both in Indiana and out-of-state, we determined that there are in-state treatment options available to Mr. Baker.