Hope for sufferers of cystic fibrosis
CYSTIC fibrosis sufferers and their families breathed a huge sigh of relief last week.
With a stroke of a pen, come October 1, a new drug that offers real hope for those with the rare condition will be added to Australia's Pharmaceutical Benefits Scheme.
For many cystic fibrosis (CF) sufferers this will mean that instead of their
families having to sell everything to afford the current price of $17,000 a month, the drug will now cost those who qualify only $40 a month.
Alan and Jenny Tunks' son Alan has suffered from CF since his birth 41 years ago and their hopes have been pinned on the new drug, Orkambi, for many years.
"It's something we have held our breath for over the last 40 years of our son's life,” Mr Tunks said.
"We were thinking we would have to cash in all our assets and super to afford Orkambi. Listing on the PBS is such a relief for us and many other families affected by CF.”
For the last 22 years the Tunks, in partnership with Byron Bay Bluesfest and Gibson Guitars Australia, have run the CF Bluesfest Guitar Raffle, so far raising more than $590,000 for research and their campaign to get Orkambi added to the PBS.
Around 4000 Australians have cystic fibrosis, an incurable condition that causes the victim's body to produce too much mucus, eventually overwhelming their lungs and digestive system and often cutting their lives short.
From birth, sufferers need constant medical treatment and physiotherapy.
Developed by Vertex, the drug is the first to actually combat the causes of CF (in those with two copies of the F508del mutation (F508del/F508del) in their CFTR gene) and not just treat the symptoms.
"It's the first drug to treat and improve lung function with trials showing hospitalisations are down 61 per cent and a 42 per cent reduction of lung damage,” Mr Tunks said.
"Most importantly it helps sufferers' mental health, enhancing their state of mind because it places them in positive territory for the first time.”
The Tunks will continue to run the Bluesfest CF Guitar Raffle because there are others out there with different mutations of the CF gene who need different treatments.
"Our son has been in contact with his doctor and we are hoping he will be among the first to use Orkambi come October,” Mr Tunks said.