State senator concerned patients with rare disorders lacking care options

Derrian Baker has Prader-Willi Syndrome, which causes severe pangs of hunger caused by a genetic disorder.

INDIANAPOLIS (WTHR) - An Indiana senator is taking action on the heels of our 13 Investigates report, "Saving Derrian."

A new resolution headed to a key health committee is asking lawmakers to make sure patients with rare disorders aren't falling through the cracks of Medicaid.

Locks and chains are standard equipment when it comes to creating a food-safe environment at home for Derrian Baker.

"We've been locking up things since we found out he has Prader-Willi Syndrome," said his mother, Debra.

Derrian and other patients suffering from PWS are plagued by severe pangs of hunger caused by a genetic disorder. They can literally eat until the point of death and never feel full.

But their bodies can't handle lots of calories. Even the smallest amounts of food can cause weight gain, leading to obesity.

Limiting a patient's intake comes with another set of complications.

"I don't want no damn salad!" yells Derrian as he sits defiantly in a chair angry about his limited food options.

He is in the middle of a breakdown.

"I don't want no damn salad!" he yells towards his mother as she offers him a salad.

Nursing homes across the state say they can't handle the anger and the outbursts of PWS patients. Sixteen have either refused Derrian a bed or recanted on in-patient offers.

Yet the one facility wanting to provide specialized PWS treatment for Derrian is not an option, according to Anthem Insurance and Indiana Medicaid.

"It is the policy of Indiana Medicaid that we always keep our taxpayer dollars in the state if at all possible," explained Joe Moser, the Director of Indiana Medicaid.

Moser has already agreed to take a closer look at Derrian Baker's case after hearing concerns from a consumer advocate on the State's Medicaid Advisory Committee.

The state pays Anthem to manage a part of its Medicaid system. Anthem ruled in-patient care for Derrian at the Children's Institute in Pittsburgh, was "not medically necessary and out of network."

It means all Derrian can get now is in-home care.

"Definitely disappointing knowing that the family identified caregivers that can aid and assist, and the state and the other health agencies weren't able to make sure they were able to access that help," said Indiana State Senator Eddie Melton (D-Merrillville).

State Sen. Eddie Melton (D-Merrillville)
State Sen. Eddie Melton (D-Merrillville)

Melton represents the region where the Bakers live. He introduced a Senate resolution asking lawmakers to dig into Indiana's Medicaid system to see how and why the state and its providers are denying access to out-of-state and out-of-network facilities for patients with rare disorders.

"Not just for one particular family, but for all families with rare disorders," said Melton who wants potential changes to help any family impacted by a rare disorder.

The senator questions whether Anthem's "no" in Derrian's case makes financial sense. He says the blanket denials place undue stress on families with loved ones facing life-threatening consequences.

The Senate resolution is now in the Health and Provider Services Committee.

Lawmakers will decide whether to launch a study committee to look at insurance and rare disorders this summer.