Handicapped children forced to try dangerous drug, says doctor

''He used to wake up and have so much energy, then crash and fall asleep by 9am'' ... Harrison White with his mother, Tracy. Mrs White says Harrison's condition improved almost immediately he took modafinil. Photo: Sahlan Hayes

CHILDREN with a severe brain disorder are being denied subsidies for a highly effective medication because the government insists they first try a riskier drug, say specialists who refuse to prescribe what they say is an outdated treatment.

Chris Seton,a paediatrician at the Children's Hospital at Westmead, said children with narcolepsy - a condition that causes them to fall asleep without warning, gives sudden bouts of muscle weakness and makes concentration difficult - could suffer life-threatening side effects, including psychosis, high blood pressure and heart palpitations, if they took the drug, dexamphetamine.

The stimulant is the only therapy routinely subsidised for the condition through the Pharmaceutical Benefits Scheme.

''I will not risk a child suffering the potential side effects,'' Dr Seton said. ''Faced with a choice between the two drugs to treat narcolepsy, nobody on the planet would chose the amphetamine.''

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Dr Seton said he once admitted a 13-year-old girl to hospital suffering psychosis after she took dexamphetamine before the new drug - modafinil - became available in 2002.

None of the 35 children he was treating for narcolepsy had been able to access modafinil at the subsidised rate because he and his colleagues refused to prescribe the cheaper amphetamines, Dr Seton said.

But subsidy rules require children and adults to first try dexamphetamine and be taken off it because of side effects or lack of response before becoming eligible for modafinil.

Dr Seton said the effects of taking dexamphetamine long-term were unknown but people with narcolepsy were likely to need medication for the rest of their lives. Only about 200 Australian children suffered narcolepsy, meaning the total cost to government would be trivial.

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Handicapped children forced to try dangerous drug, says doctor