If Rachelle and Steve Haikalis had $300,000, they wouldn’t spend it on a dream holiday or paying off their mortgage; they would buy a 12-month supply of a cystic fibrosis drug to prolong the life of their daughter Ellie.
But the Hoppers Crossing couple doesn’t have the money to spare and is desperately hoping Kalydeco will be added to the Pharmaceutical Benefits Scheme.
“Kalydeco is the closest thing to a cure for cystic fibrosis,” Mrs Haikalis said.
“It is available in Australia, but it’s unaffordable at $300,000 a year. If I could, I would buy the drug tomorrow and give it to Ellie, but I can’t.”
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.
Ellie, 11, was diagnosed with cystic fibrosis four weeks ago after battling stomach pains and a five-month chest infection.
Her GP, concerned that the infection hadn’t responded to six courses of antibiotics, ordered a chest X-ray and referred her to the Royal Children’s Hospital.
Doctors there recognised the symptoms of cystic fibrosis and carried out a test to measure the concentration of chloride in Ellie’s perspiration.
The test revealed Ellie has a rare gene, G551D, that does not allow salt and fluid to flow through her body. The result is a build- up of sticky mucus in her lungs and digestive system. About 8 per cent of cystic fibrosis patients in Australia, or about 200 people, have the gene.
The diagnosis means Ellie must take antibiotics and salt tablets every day, do chest physiotherapy and use a nebuliser at least twice a day. She must also exercise for at least 30 minutes to keep her lungs healthy.
Kalydeco would put an end to the routine. Tests have shown a significant improvement in patients’ lung function after two weeks on the drug.
“It makes me cross that it’s my daughter and I could give this to her and in 14 days she would dramatically improve,” Mrs Haikalis said.
The pharmaceutical benefits advisory committee will meet on November 23 to decide if Kalydeco should be listed on the PBS, after deferring its decision in August.
Mrs Haikalis urged people to write to Lalor MP Joanne Ryan and Cystic Fibrosis Australia to pledge their support.
