Will PM Abbott Save This Boy?
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.
To contact the editor, e-mail:
Most Popular Slideshows
- Taylor Swift Named Forbes' Second Highest Paid Country Musician [PHOTOS]
- Forever Lost: Indescribable Anguish for Malaysia Airlines MH17 Families, Remains of Some Victims May Never Be Found (PHOTOS)
- Lunch with the Gods: Pope Francis Eats with Vatican Workers in Cafeteria
- Global Aviation Accidents: UN to Form Safety Task Force, Gov'ts Should Share Intelligence Info to Avert Future Incidents on Flying Over Warzones (PHOTOS)
Join the Conversation
- The Mind is the Key in Female Orgasms: Research
- Super Model Andreja Pejic Confirms Identity As Transgender
- Complete Darkness at Night Key Brings Maximum Success of Breast Cancer Therapy: Latest Study Reveals
- 9 Tips For Surviving a Plane Crash
- 9/11 Cancer Collection Claims 2,500 Ground Zero Rescue Workers: All of Them Have Cancer Now
- Google Nexus 6, 8 with Android L on Release Date Promises Killer Mobile Device Experience
- iPhone 6 Release Date Relevance to iOS Newbies: Specs Meaning, Price Considerations
- 12-inch MacBook Apple Retina and 2014 MacBook Pro to Feature Liquid Sensors, Release in October
- Travel at Own Risk; Emirates, Qantas Differ on Flying over Iraq Warzone; Emirates Reroutes, Qantas Pushes On
- The Pirate Bay Releases ‘The Mobile Bay’: Mobile Torrent Download Made Easier but Remains Illegal