Will PM Abbott Save This Boy?

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By Athena Yenko | February 3, 2014 11:45 AM EST

As Senator John Madigan put it, it was "incomprehensible and agonising" to know of children enduring a rare disease without a drug available to treat them.

This was the case of Ashley Grey - a life-saving drug was available, but the question was will the government of Prime Minister Tony Abbott fund the drug?

Little Grey had a peculiar life-threatening disease called atypical haemolytic-uraemic syndrome (aHUS) which was also suffered by 150 people in Australia. The disease can only be treated by a rare drug called Eculizumab. However, this drug was not available through Australia's Life Saving Drugs Program, and Grey only depended on a charity of a pharmaceutical company for his annual treatment worth $240,000.

"To know that there is medicine that can keep these children and other Australians out of hospital - but it is not available through the Life Saving Drugs Program - is heartbreaking for all concerned,'' Senator Madigan said.

Hence, Mr Madigan called on Mr Abbott to arbitrate in approving the drug immediately. Eculizumab would cost an Australian taxpayer approximately $2.22 a year if it would be sponsored by the government.

The Federal Health Department was not clear on its pending decision and could only explain the policies on its Life Saving Drugs program. It said through its spokeswoman, Kay McNiece, that the program was demand driven, meaning that the availability of such "very expensive, life-saving drug to Australians with very rare, life-threatening conditions" could only be accessed depending on the massive need for the drug.

"Each condition has separate eligibility guidelines, developed and administered with the advice of an expert disease advisory committee,'' Ms McNiece told Sunday Herald Sun.

The Sunday Herald Sun reported in detail the plight of Grey and his family in fighting his rare disease.

As for the Eculizumab, a known orphan drug, Herald Sun said that taxpayers would only pay 1.9 cents each year to save Ashley - not much - but for the patients like Ashley, the amount was already worth their lives.

In 2013, Australia's Life Saving Drugs Program was reviewed prior to the September election. Politicians gave promises and patients were given false hopes since there had been no change up until this time.

Dr. Suzanne Hill of Pharmaceutical Benefits Advisory Committee rejected an interview with the Herald Sun. Civilly, she told the newspaper that it was unacceptable to give statements pending the Eculizumab-for-aHUS decision.

However, a representative who refused to be named said that a talk with Ms Hill was devastating.

"She listened to what we said and seemed sympathetic. But at the end, she said: 'It's the politicians you need to be speaking to, not me'," said the rep.

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