EMMA McCLUNEY
A new drug called Kalydeco has given hope to Cystic Fibrosis sufferers all over the world, despite only being in its trial phase.
Although looking healthy and running a successful photography business in Brisbane, Alex Parker was diagnosed with genetic disease Cystic Fibrosis at birth.
Ms Parker said she is one of the lucky ones who have been able to try Kalydeco and reap the benefits.
“I have Cystic Fibrosis which is a genetic disease and essentially what the body does is produce a lot of thick and sticky mucus which affects the lungs and digestive system and pancreas so you contract a lot of lung infections very easily and have to take medication to help digest food,” she said.
Since trialling the ‘wonder drug’ the twenty-five year old has never looked back.
“Without Kalydeco I contract lung infections quite frequently which results in going into hospital and going on [intravenous] antibiotics and ends in physiotherapy and other medications.”
“At the end of 2011 my health took quite a steep decline and things weren’t looking great.
“My mother found out about the trials that were being done with Kalydeco in America and at the time my doctor told me I had the G551D gene which makes you eligible to take Kalydeco.”
Even though this medicine can improve the health and even increase life expectancy for Cystic Fibrosis sufferers with the G551D gene the price tag is a hefty one.
“It’s $300,000 per patient per year…for three months supply it’s $75,000,” Ms Parker said.
“The government, the PBAC and the pharmaceutical companies need to come to the party and make an agreement…the current system for introducing a new drug is too slow.”
A petition is running to make Kalydeco available for all eligible Australians at https://www.change.org/p/make-kalydeco-available-to-australians-with-cystic-fibrosis.
