A FATHER who hoped a “miracle” cystic fibrosis drug would be made available for his daughter says he has now “basically given up”.
Goornong resident Amelia McCrohan, 6, suffers from a rare form of cystic fibrosis that could be treated with Kalydeco.
The Pharmaceutical Benefits Advisory Committee recommended the drug be subsidised, but Tim McCrohan said the family would not be able to access it due to strict conditions.
“We’ve basically given up now,” he said.
“The government has gotten in the way.”
The recommended conditions to access the drug means Amelia must wait until her condition declines before it becomes available to her.
If the drug was currently available, Amelia would be able to avoid any damage caused by the disease.
“It’s a tough time,” Mr McCrohan said.
“When you have a look at the effects the drug has on people who have had significant lung disease and how healthy they are, the drug has a really good outcome.
“But at the moment there’s no real hope of getting it anywhere.
“There are no words in the vocabulary to describe my anger.
“There’s a human at the end of this and (Health Minister) Peter Dutton and the drug companies are playing politics over her life.
“We can’t keep waiting for this, we’ve just got to get on with our lives.”
Glenyce McCrohan said cystic fibrosis had not yet caused significant damage to her daughter, but eventually would.
“But if she was able to get onto Kalydeco the hope is it would stop the damage from even starting and she could have a better life,” she said.
The family could pay for the drug, but it would cost $300,000 per year.
Meanwhile, they remain waiting for a better outcome.
"It just depends on her ongoing health as to how bad that gets," Ms McCrohan said.
"Some kids at Amelia's age have been in hospital countless times already.
"Amelia's only been in three times
"So at the moment we’re considering ourselves lucky with Amelia's health.
"We just don’t know when that's going to change."