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Parents seeking insurance coverage for treatment of infant's rare skin condition

The parents and doctors of an infant suffering from a rare genetic skin ailment appealed to the Bureau of National Health Insurance (BNHI) yesterday to fund the expensive specialized dressing necessary to prevent the baby's condition from deteriorating further.

Seven-month-old Gao Guan-yu (高冠宇) suffers from hereditary epidermolosys bullosa, a rare condition that causes his skin to become extremely fragile and prone to blistering.

Wang Ching-chia (王景甲), one of the doctors at National Taiwan University (NTU) taking care of Gao, told the press yesterday that Gao's condition is grave, with tissue damage that resembles serious burns all over his body.

The infected wounds have resulted in septicemia, or blood poisoning, Wang said.

Daily changes of specialized silicon-foam dressing sold under the trade name Mepilex are necessary to protect the baby's skin from trauma, he said.

However, such specialized dressings are currently only approved by the BNHI for some burn victims or in cases where damage to the skin exposes nerves, musculature or blood vessels.

NTU doctors submitted an advance request to the BNHI to utilize the dressing on Gao, but it was not approved.

"Such silicon-foam dressings are not on the list of medical supplies that need to be applied for in advance," said Chen Pao-kuo (陳寶國), the director of the pharmaceutical and medical device unit at the BNHI.

Chen said the BNHI had not previously received any word from doctors treating the ailment that silicon-foam dressings should be covered by the BNHI for this condition. However, he said that given the serious condition of Gao, a panel of experts will be convened as quickly as possible to discuss whether or not the dressing should be covered by the BNHI for this condition.

"I can't give you a timeline," Chen said. "I can only say it will be soon."
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