Bella Ingram is a fighter.
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The 16-year-old was born with cystic fibrosis, a genetic condition which affects organs including the lungs and can leave people quite literally fighting to breathe.
But Bella’s latest battle is not for herself. She is fighting to help other young Australians with CF – the nation’s most common genetic condition – to get access to medication which could make a real difference to their lives.
Potentially, the drug could benefit about 1300 people, as it is aimed at the most common mutation of CF.
In July, the Pharmaceutical Benefits Advisory Committee will consider an application for a subsidy listing for medication called Orkambi, which has been dubbed by some people with CF as a “wonder drug” or the “pink pills of hope”.
Orkambi has already been refused a listing on the Pharmaceutical Benefits Scheme three times, after the federal government and drug manufacturer Vertex have failed to agree on costs.
Bella herself knows exactly what difference Orkambi can make because she has been taking it herself for about a year.
She wants other people to have the chance to experience the improvements she has.
“I’ve noticed I have a much better appetite, which makes it easier to maintain my weight, and have had less coughs and colds and lung infections,” the Wagga High School student said.
Mum Lea Ingram said while these kind of improvements may not sound like much, they were important for people with CF.
“If they’re not getting coughs and colds and lung infections, their lungs are healthier for longer,” Mrs Ingram said.
Bella, a keen musician, said it had been estimated that Orkambi could add as much as 21 years to the average life expectancy of someone with CF, which is currently about 37 years.
“I am one of the incredibly lucky few that have access to the drug as part of a drug trial agreement or on compassionate grounds but other than these limited options, the magic pills are out of reach,” she said.
Without a PBS listing, the annual cost of Orkambi to a patient is $250,000, but Bella said there are even bigger concerns.
“If it’s rejected again, there is a real threat of the company pulling out of Australia all together,” Bella said.
