State loses case over special medical diet for 2 - WMC Action News 5 - Memphis, Tennessee

State loses case over special medical diet for 2

NASHVILLE, Tenn. (AP) - The state was wrong to refuse to pay for special foods for two young TennCare patients with a rare genetic disorder, a Nashville judge has ruled.

State officials fought the decision, fearing that it could produce a flood of requests from people who want TennCare, the state's expanded Medicaid program, to pick up the tab for food for medical diets.

Davidson County Chancellor Carol McCoy issued the ruling Wednesday in the case of two Coffee County children born with a rare metabolic disorder. The children, Marjory and Dante Leonard, 7 and 5, were diagnosed with phenylketonuria, also known as PKU, shortly after birth.

Their grandmother, Roxane Sucharzewsi, filed a lawsuit in November challenging the state's 2006 decision to stop paying for special food for the children. She argued in court documents that the children would be severely brain damaged if they didn't receive specially modified food that can't be bought in grocery stores.

Sucharzewsi wept after hearing of McCoy's ruling on Thursday.

"Oh my, God," she said, gasping and pausing to catch her breath during a telephone interview. "I'm just so overwhelmed," she said. The grandmother said that she has to specially order their food and it gets very expensive. So far, the Coffee County Health Department has been helping her pay for it.

"A regular thing of their macaroni and cheese would cost you $9 for one little package, and it goes up from there," she said.

People with PKU cannot break down a part found in all protein. There is no cure for the disease, and patients will suffer irreversible brain damage if they don't stick to a diet that's low in protein but still provides other nutrients necessary for good health.

"If you don't treat a patient with PKU, they're going to become mentally retarded, usually placed in an institution," said Marshall Summar, a professor of pediatrics at Vanderbilt University Medical Center. With the correct diet, he said, they have normal IQs and intellect.

State officials had said a Tennessee regulation barred the state from paying for food for Medicaid recipients. The state is still providing a specialized formula for the children.

McCoy dismissed arguments by state officials that the case could set a precedent that would allow "many individuals with medical conditions to insist that their food items be covered."

PKU is different from other medical conditions that require special diets, the chancellor said, because patients can't consume ordinary food or modify their diets with easily available products. She also said the state failed to take into account the serious harm that will result to the children if they don't adhere to their diet.

The chancellor found that the food was medically necessary and the state violated federal health-care laws by denying payment.

The state hasn't had time to review McCoy's order and decide whether to appeal, said state attorney general's office spokeswoman Sharon Curtis-Flair.

About 1 in 15,000 people are born with PKU, which is inherited, Summar said. Vanderbilt has about six new patients with PKU every year.

There has long been debate over whether states should pick up the tab for the food not available at the grocery store. He hailed McCoy's ruling as a step forward.

"There's rejoicing among the metabolic disease community," Summar said. "This is good news for us."            


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