Man dies from rare disease that sparked Medicaid review – The Herald Bulletin
INDIANAPOLIS — A Merrillville man whose disease recently prompted a request to review Medicaid practices in Indiana has died from his rare condition.
Derrian Baker, 26, suffered from Prader-Willi Syndrome, a genetic disorder characterized by insatiable hunger and can lead to life-threatening complications. He died Monday.
His death was announced Tuesday during a session of the full Indiana Senate.
“I just talked to his father,” said Sen. Eddie Melton, D-Merrillville. “And he said they are more determined than ever to help advocate for this rare syndrome. Not only that, they’re more determined than ever to advocate for those who are falling through the cracks in our Medicaid system.”
Last month, Dan and Debra Baker testified before the Senate Health and Provider Services Committee to discuss their son’s condition. They spoke of their unsuccessful attempts to get Medicaid to cover treatment.
In response to their testimony, Melton wrote a resolution on March 29 urging the state’s legislative council to assign to a summer study committee the topic of Medicaid coverage for patients in need of specialty care, permitting more access to out-of-state and out-of-network resources.
The bill passed 10-0 from committee.
Due to his condition, Derrian Baker had been turned down by 16 nursing homes. He was accepted by The Children’s Institute in Pittsburgh, but his medical provider, Anthem, denied the treatment saying it was “not medically necessary and out of network.” Medical bills for the family totaled more than $1 million.
“Medicaid paid a total of $1 million to keep Derrian alive here in Indiana but refused to spend a quarter of a million to send him to Pittsburgh, which would have kept him alive at that time, providing him with a sustainable life,” Melton said.
Debra Baker told the committee: “They recommended us to go to facilities here in the state, which they said could provide care that Derrian needed. That never happened, and several facilities turned us down because of the nature of his issue.”