A local resident has helped changed the lives of thousands of Australians with Cystic Fibrosis (CF) this month, successfully campaigning to list a critical drug onto the Pharmaceutical Benefits Scheme (PBS).
Jess Ragusa has lived with CF for all of her 28 years, forking out over $140,000 to help pay for the Trikafta medication.
Her parents even re-financed their home so they could afford another five months’ worth of treatment for Jess.
However, from April 1, no family will have to suffer the way Jess’ did with the recent news that the medicine will now cost as little as $6.80 for concession holders, or a maximum of $42.50 per script.
The announcement comes on the back of Jess’ campaign, which started in January, to raise funds for her treatment and for signatures to help lobby the Federal Government into listing the life-saving drug on the PBS.
“The goal was originally $20,000 to get one month of Trikafta and my gorgeous friend Erin organised a fundraiser for me personally, which we had on Saturday night, and we made over $10,000 there,” Jess said.
“The medication itself is life changing for me – it is helping me physically, emotionally, mentally, and now this burden of weight is gone because the money side is gone.”
Jess has previously said that without access to the medication, her body would start to deteriorate.
With one in 2,500 babies born with CF in Australia and with no cure, the listing will prove vital for CF patients who have been unable to fund their treatment at all.
“There are six patients in Australia that are self-funding and we have just under 4,000 CF patients so most of the population couldn’t afford it because, unless you’re in a financial position to, you just have to sit back and wait,” Jess said.
“It’s a great outcome for us financially but all these people now have access to a life-saving medication.”
Jess said she never went in with this goal and initially just wanted her friends and family to sign a petition.
“I pushed and I pushed because we deserve it … CF is the most common life-threatening disease in Australia, but no one knows about it.
“Whilst we are small in numbers, the Central Coast got behind me, my god, we are big at heart … I’m really proud to be a Coastie because we really stepped up our game.
“Getting access to a medication is great but knowing that I’ve been able to help kids live longer or adults come out of hospital … I’m really proud of myself, but I’m also so proud of the CF community because we never gave up, we have been fighting for a very long time for something that we deserve.”
Cystic Fibrosis is a progressive, genetic disease that causes persistent lung infections and Trikafta works by improving the flow of chloride and water in patients who have a certain genetic defect and helps improve lung function and breathing.
The PBS listing has been recommended by the independent Pharmaceutical Benefits Advisory Committee.
Maisy Rae