Family vows to keep Derrian's legacy alive, renews push for Medicaid review

Derrian Baker lost his battle with Prader Willi Syndrome in April.
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INDIANAPOLIS (WTHR) — The parents of an Indiana patient who suffered from Prader Willi Syndrome say their son did not have to die.

Dan and Debra Baker are now renewing their fight to get better insurance coverage for those with rare disorders.

13 Investigates first uncovered the plight of their son Derrian Baker back in February.

Now more families want Indiana lawmakers to see how lives are being saved with the help of a special out of state program.

Derrian Baker Memory Balloons
Dan and Debra Baker released balloons in memory of their late son, Derrian.

13 Investigates reporter Sandra Chapman spoke with the Bakers during a special memorial for Derrian.

"I'm thinking of his big smiley face and you know how happy he would be," said Debra Baker as she carried a bouquet of blue and white helium filled balloons on a sunny afternoon in Military Park in downtown Indianapolis.

Debra Baker and her husband Dan were preparing a special launch in memory of the son they lost.

"God we thank you for all that you did for him and all that you're going to do in his honor and the days to come," prayed Dan.

The couple believes their son Derrian could have lived if Anthem Insurance and Indiana Medicaid had approved specialized care for him.

"Well this is one of the most challenging things we've ever done in life. For any person, any parent or any body who loses a loved one, it's one thing" said Dan Baker. "But when it's a child, it's something else."

Derrian Baker in the hospital. (Photo: Dan Baker)

Derrian Baker would have been 27-years old on July 25.

"Happy Birthday Derrian!" shouted the Bakers as they encouraged their two grandsons to release the balloons to celebrate Derrian's life.

Just months earlier, Derrian's path to special treatment for PWS, Prader Willi Syndrome, got caught up in a state Medicaid policy paying only for in-state care.

PWS causes patients to feel constant intense hunger. It's also marked by life threatening illnesses linked to obesity, diabetes and respiratory distress.

An in-patient PWS unit at the Children's Institute in Pittsburgh accepted Derrian for treatment in August 2016. But Anthem, a contracted Indiana Medicaid provider, refused to pay for it even though as many as 16-nursing facilities across the state turned Derrian away. The nursing facilities were not equipped to handle PWS and the behaviors that come with it.

13 Investigates documented some of Derrian's irritability and outburst brought on by the constant hunger pangs after he was sent home from a northwest Indiana nursing facility.

In April, Derrian died at home without the specialized care he needed.

PWS families across the country were heartbroken and reached out to 13 Investigates. One of the families wanted to show what could have been possible for Derrian.

Russell Sullivan is also battling Prader Willi Syndrome and sent 13 Investigates a video about his journey.

"My name is Russell," said a teenaged boy on a video sent from North Carolina to 13 Investigates.

The young man is the same Russell Sullivan 13 Investigates met at The Children's Institute in January.

At that time, the 15 year old was struggling with his workout at the facility, weighing in at just over 300-pounds.

But the video showed a young man who had made an amazing transformation.

After seven weeks in the program, Russell lost 32 pounds.

He took what he learned during in-patient treatment at the Children's Institute home where he lost another 32 pounds.

Russell Sullivan continued to lose weight after receiving treatment at The Children's Institute. (WTHR Photo)

Russell's story is remarkable, because initially his insurance also denied an in-patient stay at the Children's Institute.

But unlike Indiana, North Carolina Medicaid determined no State facility could provide adequate PWS treatment and allowed Russell to go to Pittsburgh for life-changing assistance.

It's exactly what the national PWS Association and others had hoped for Derrian Baker.

Just weeks before Derrian passed, lawmakers had voted to tackle Derrian's plight this summer.

"There are many individuals across the state who reached out to me particularly after hearing about Derrian's situation," said Senator Eddie Melton, (D) Gary.

Senator Melton represents the Baker's legislative district, He authored and received overwhelming support for a Senate resolution to have a hearing on Medicaid coverage for rare disorders. But the topic was not selected for a summer study committee.

Now with bi-partisan support Melton vows to keep pushing the issue.

"It's not just about Derrian, there is a whole group of people who are out here that have been affected, that are affected and that will be affected if we don't make some wise decisions," said Dan Baker.

Republican State Senator John Ruckleshaus says he will support efforts on his side of the aisle to get a review of Indiana's Medicaid for rare disorders in the 2018 legislative session.