A brave woman who has a rare genetic condition is being forced to fork out $21,375-a-month for life-saving medication because it’s not approved by the Pharmaceutical Benefits Scheme, with her parents re-mortgaging their house to fund her treatment.
Jess Ragusa, 27, from NSW’s Central Coast, was born with cystic fibrosis, a life-shortening disease that causes cells to produce a thick mucus which damages the lungs and digestive system.
She defied doctors predictions that she would not survive childhood, only to be told at 18 she only had six months to live.
‘I was so unbelievably sick, I was surprised they even gave me six months. I was terrified, sad, shocked and heartbroken. Every upsetting emotion you can feel,’ she told 7News.
Jess Ragusa, 27, from NSW’s Central Coast, was born with was born with the life-shortening genetic condition cystic fibrosis
Ms Ragusa is now taking life-extending drug Trikafta which has radically improved her quality of life, allowing her to ‘breathe’, ‘run’, and ‘laugh’ without coughing, puffing, or vomiting.
But because the medication is not approved under the Pharmaceutical Benefits Scheme, it comes at an exorbitant cost – and Ms Ragusa only has four months left until she runs out.
‘Without the drug, my body will ultimately stop working and it will deteriorate,’ she said.
Ms Ragusa said her parents refinanced their mortgage and used the equity gained on their home amid the booming property market to fund the drug.
‘Unfortunately with the ludicrous pricing, we can only afford it for nine months, I’ve used five and I have four months to go before we run out of money, and we stop paying for the medication,’ she said.
Ms Ragusa feels hopeful for a future and building a family with her husband (pictured together) ever since she started taking Trikafta
Ms Ragusa has beaten two death sentences after her parents were told she wouldn’t live past six then she was given six months to live at age 18
At the time Jess was born, the predicted life expectancy for Cystic Fibrosis was 30, although children born with the disease after 2015 are now expected to live to 46-years old.
The horrible diseases causes her to suffer from constant breathlessness, nose bleeds, and exhaustion, taking anywhere between 30 to 50 tablets a day to manage symptoms.
After Ms Ragusa was given a death sentence at 18, she did everything in her power to improve her health.
She worked out frequently with a personal trainer to improve her breathing and stayed at home to prevent catching immune-depleting viruses, beating her terminal diagnosis.
Last November, she started taking Trikafta which ‘changed her life’, boosting her lung capacity by 24 per cent to 84 per cent.
The disease, which affects about 3,500 Australians, causes an abnormal build-up of mucus in the lungs and digestive system
Ms Ragusa is now thriving and determined to surpass her 30-year life expectancy and build a family with her husband – but fears she will soon no longer be able to afford the $300,000-a-year drug.
Cystic Fibrosis Australia has launched a petition calling on the Australian government to subsidise the expensive drug, which saves the lives of 90 per cent of recipients.
Ms Ragusa is urging the government to take action and has called on Australians to sign the petition to help get her have a ‘future’.
Friends have launched a GoFundMe campaign to help raise money to fund Ms Ragusa’s treatment while they work to try and get the expensive drug added to the PBS.
