Sick boy denied therapy funds
As they prepare to fly to the US tomorrow to save the life of their 18-month-old son, Edwin Ho and wife Rochelle Luk worry the Federal Government is refusing to fund his best chance at survival because of Budget cuts.
They have mortgaged their Perth home and begged and borrowed from family and friends to raise $200,000 so that Edric can have targeted proton beam therapy in Florida to treat his aggressive brain tumour known as anaplastic ependymoma.
But they have been knocked back for funding under the Federal Health Department's Medical Treatment Overseas Program on the grounds Edric can have more standard treatment known as conformal photon radiotherapy in Australia.
The decision comes despite recommendations from his treating doctors, including a Sir Charles Gairdner Hospital radiation oncologist, that the best treatment for Edric is the proton treatment he is due to start in a few weeks at the University of Florida.
His application was also supported by the Royal Australian and New Zealand College of Radiologists, which said the best treatment for Edric was unavailable in Australia and other treatments delivered much bigger areas of low dose radiation to brain tissue that could be harmful.
Mr Hu said he was devastated by the rejection, especially after another Perth boy Jayden Stone was given government funding for his successful proton radiotherapy in Chicago in 2012.
"All his doctors say the treatment that is available here is risky for Edric because of the size of his tumour and his age, so we thought we had a strong case for government funding," he said.
Ms Luk said that proton therapy was already recommended in Britain for children with ependymoma.
She said their claim had been rejected based on an oncologist's advice, not the radiation oncologist's opinion.
"I can't help questioning if our Government sacrificed an 18-month-old boy because of Budget cuts," she said.
A Health Department spokeswoman said a final decision had not been made but medical experts had advised that comparable radiotherapy treatment was available in Australia and other children with the same condition did not travel overseas for treatment.
A draft medical assessment had been given to his parents for comment, in consultation with the toddler's doctors.
"Any additional information submitted by Edric's parents will be considered before a decision about his eligibility is made," the spokeswoman said.
Sir Charles Gairdner and Princess Margaret hospitals said yesterday they would appeal against the decision.
