The Department of Health (DOH) yesterday sparked controversy when it announced that it would send a free three-month supply of a preparation called "Lorenzo's Oil" to three Taiwanese boys undergoing treatment in the US for a rare genetic disease called adrenoleukodystrophy (ALD).
Family members of ALD sufferers have criticized the decision, saying it represents an unequal allocation of funds for medical care.
Lorenzo's Oil is a combination of two fats extracted from olive oil and rapeseed oil. According to local TV news reports, Lawrence Charnas, an authority on ALD in the US, said at a press conference at the University of Minnesota on Monday that "Lorenzo's Oil" can allay the genetic disorder's devastating symptoms.
The announcement came as a public surge of compassion for the three boys started giving way to criticism of their parents' handling of money that has been donated to help pay for the boys' treatment.
Prior to departing for the US in January, the Chang family raised NT$74 million (US$2.3 million) in donations within three days after media reports about the family's plight.
As members of the public started questioning how the family would use the unexpectedly large amount of money that had been donated, the boys' father, Chang Ming-hui (
Although local health authorities have not yet received any word from the medical team at the University of Minnesota's Kennedy Krieger Institute, which is treating the Chang children, the bureau based its decision to send them a three-month-supply of "Lorenzo's Oil" on a television broadcast of the US doctors' diagnosis.
Health officials said that the controversy over how the donations would be used should not be confused with the Chang children's right to life-saving medication.
"The administration of the donations is one thing; medication is another. We respect doctors' professional judgment. We hope that the discussion can be steered back to medical professionalism," said Lin Shio-jean (
"Our policy of safeguarding the health of Taiwan's citizens remains unchanged," Lin said.
ALD is a rare genetic disorder that destroys the brains of young children. The inherited disease is characterized by the deterioration or loss of the myelin sheath surrounding nerve cells in the brain.
The condition often leaves children in the grip of progressive neurological disabilities, including loss of eyesight, seizures, coma and eventually death.
After using up the initial 24 bottles of the oil they were given by the National Taiwan Univrsity Hospital, the Changs are facing difficulties in obtaining more oil in the US, since the Food and Drug Administration has not yet approved the compound. To gain access to the oil, the Chang family must first obtain a prescription from the world authority on ALD, Dr Hugo Moser of the Johns Hopkins University in Baltimore.
The DOH's decision drew mixed responses from local doctors and patient groups.
"The oil is just food. It is not a cure. The best treatment is a marrow bone transplant, which the medical teams at our hospital can carry out no less safely than US surgeons," said Lin Kai-hsin (林凱信), the chief of hematology at the department of pediatrics at National Taiwan University Hospital.
Before the Changs flew to the US, the Bureau of National Health Promotion asked Lin to examine the three children and assess the risks and benefits of their receiving treatment in Taiwan. Lin suggested that the boys should stay in Taiwan.
"In Taiwan, access to the oil is a lot easier. Besides, our surgeons do not lag behind those in the US in any respect," said Lin, who described the family's decision to go to the US as an unfortunate mistake.
Others voiced concern about whether the treatment the boys are getting can be applied to the other 200 patients with ALD in Taiwan.
"We understand and support the parents' effort to save their children. But the government should not dump all its resources on one single case just because it managed to grab the media's attention," said Cheng Chuan-sheng (鄭春昇), who lost one of his sons to ALD three years ago.
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