A BENDIGO great-grandmother is desperately hoping "miracle" drug Kalydeco will be approved by the Pharmaceutical Benefits Advisory Committee when it re-sits in November.
Lorna Maxwell’s great-granddaughter, Ellie Haikalis, 11, was diagnosed with the G551D mutation of cystic fibrosis on August 23 this year. About five per cent of sufferers have this form.
Ms Maxwell and her granddaughter Rachelle Haikalis have joined the campaign to get Kalydeco on the Pharmaceutical Benefits Scheme.
The medication removes all symptoms of the disease but costs $300,000 a year.
Goornong’s Tim and Glenyce McCrohan, whose five-year-old daughter Amelia has cystic fibrosis, previously appeared in the Bendigo Advertiser calling for the tablet to be made affordable.
The PBAC reviewed Kalydeco in July but a decision was deferred.
On November 5, the PBAC will review it again, and hopefully pass down a recommendation to federal Health Minister Peter Dutton.
Ellie’s mother Rachel Haikalis, of Hoppers Crossing, said her daughter was diagnosed unusually late in her childhood.
Ellie contracted a chest infection in April which refused to clear up, then was tested and diagnosed for cystic fibrosis.
“I was shocked,” Mrs Haikalis said.
Mrs Haikalis said if the drug was not placed on the PBS, they would consider moving to Scotland, where she has family and the drug is subsidised by the government.
“We just want this medication badly," she said.
"If I had $300,000 I’d go out and buy it tomorrow but I don’t," she said.
Rachel called on the public to get behind the campaign by signing a petition at www.gopetition.com and writing to their federal member of parliament.
“We just want to create as much awareness as possible,” she said.