TennCare delays critically-needed bandages for infant

TennCare delays critically-needed bandages for infant with rare skin disease

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Asa's parents, Maranda and Kenneth Madden, say running out of the bandages is not an option. Asa's parents, Maranda and Kenneth Madden, say running out of the bandages is not an option.
Thirteen-month-old Asa Madden has a disease called epidermolysis bullosa, E.B. It's a defect that causes blistering of his fragile skin. Thirteen-month-old Asa Madden has a disease called epidermolysis bullosa, E.B. It's a defect that causes blistering of his fragile skin.

By DON DARE
6 On Your Side Consumer Investigator

POWELL (WATE) - A young couple whose baby has a rare skin disease needs bandages in a timely manner.

But when they were running out of bandages and the process of getting new ones was unnecessarily delayed last month, the couple called 6 On Your Side.

Thirteen-month-old Asa Madden has a disease called epidermolysis bullosa, E.B. It's a defect that causes blistering of his fragile skin.

Children with this condition are called "butterfly children" because their skin is said to be as fragile as a butterfly's wings.

Asa's parents, Maranda and Kenneth Madden, say running out of the bandages is not an option.

To help promote healing and reduce infection, Maranda carefully changes several times a day the special bandages around Asa's tiny legs and arms.

She says a hug, a touch, even a fall can result in blisters. 

"This is life as he knows it," Maranda said. "He is very brave."

The Madden's have insurance, but it does not cover the critical supply of bandages and gauzes they need. TennCare's health plan covers that cost, which amounts to several thousand dollars a month.

Kenneth says they have had no trouble gaining approval when ordering Mepilex Transfer bandages from a company called Care Centrix. TennCare also approved special gauzes of different sizes that hold the bandages in place.

But last month, the couple says, TennCare's health plan started handling the approval process.

"Prior to February, things were smooth the first year of Asa's life," Kenneth said.

He says it took weeks last month to gain approval from TennCare for the bandages and gauzes.

"When I call I get the run-around, saying our order is in the approval process, when it usually only takes two to three days," Kenneth said.

"We called TennCare every single day explaining we were getting low," Maranda said. "Then we were out."

At one point last month, Asa went without clean bandages for two days.

The Madden's called their doctor, who sent an emergency supply.

Ever so tenacious, Maranda was on the phone to TennCare nearly every day. 

"We were also told to take our child to the hospital if we were to run out, rather than prioritizing the authorization," Maranda said.

Eventually the critically-needed supply did arrive last month, several days late.

6 On Your Side contacted TennCare. The state told us it does not feel Madden's case "was handled with the level of care and attention we all expect."

TennCare says its health provider, Blue Care, "is currently offering additional education to their staff and suppliers to prevent any future problems and does not anticipate any further delays."

The couple says they are pleased with TennCare's response, which will be put to the test within the week when they re-order Asa's supply of bandages and gauzes.

TennCare says it is continuing to gather additional information related to the Madden's case.

Additionally, we talked with another family whose child has E.B. They says they experienced the same problem.

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