Jess Ragusa of Kincumber has lived with cystic fibrosis (CF) for all of her 27 years and is urging Central Coast residents to sign a petition to get the new medication Trikafta onto the Pharmaceutical Benefits Scheme (PBS).
Ragusa was diagnosed with the condition through a heel prick and sweat test shortly after her birth.
“Not much was known about CF back then, and with so much uncertainty around what was going to happen my life expectancy was looking grim,” she said.
“We moved from Sydney to the Central Coast (when I was) a kid, because mum and dad wanted me to live my best life.
“Within weeks, I was dancing, playing netball and soccer, swimming, doing nippers, and athletics.
“I was a socialite, overly energetic, and constantly talking.
“I was making up dances to show my parents in the living room, giggling myself silly on the trampoline and running amuck, as any young girl did.
“I hated my physio, hated my meds, hated knowing that I was supposed to be the sick kid, wrapped up in cotton wool – so I did everything in my power to prove them wrong.
“Everything was going so well but at 18 I got kicked out of the paediatric hospital (because I was an adult) and for the first time, had a hospital admission for my CF.
“I was a complete mess – I had 18 years of being healthy, fun, and active and within a few months of being in an adult hospital, my lung function had dropped and I was diagnosed with Burkholderia Cepacia – a hideous antibiotic-resistant infection that literally never leaves.
“They gave me six months to live.
“I fought really hard to be okay, to be fit, to be healthy to stay alive.
“Since I have been taking Trikafta, I have gotten my life back and I am able to plan my future with my husband, James.”
But the drug is not on the PBS.
“My parents had to re-finance their home just so that I could pay for the medication which is costing $6,000 per week or $21,735 a month,” Ragusa said.
“The average lifespan of a person with CF is 30; I am 27.
“My family and I can only afford to pay for Trikafta for another five months and if I do not have access to this medication, my body will start to deteriorate.”
Member for Gosford, Liesl Tesch, is calling on Federal Health Minister, Greg Hunt, to put the life-changing drug on the PBS.
“Trikafta was recently recommended by the Pharmaceutical Benefits Advisory Committee to be listed on the PBS but the Federal Government is yet to commit to the move,” Tesch said.
Tech said the petition, run by Cystic Fibrosis Australia, needs the 35,000 signatures for it to trigger a response from the Minister.
“Labor is strongly urging the community to get on board with this petition to keep applying pressure to the Morrison Government,” she said.
“People with cystic fibrosis are suffering and the out-of-pocket costs of this drug is huge.”
Labor Candidate for Robertson, Dr Gordon Reid, has also thrown his support behind the online petition.
“From a medical perspective, this medication is very effective for those living with cystic fibrosis but completely unaffordable for average Australians,” he said.
“Australia prides itself on its world-class Medicare system which is designed to leave no Australian behind.
“Until Prime Minister Scott Morrison and Minister Hunt puts this drug onto the PBS they are leaving Australians with cystic fibrosis to suffer or pay for basic treatment.”
“People with CF who live in Australia are having to self-fund Trikafta and this is not sustainable.”
The online petition can be accessed via: http://www.aph.gov.au/e-petitions/petition/EN3915.
Terry Collins