Cystic Fibrosis Drug Awareness on Coffs Coast – News from the area

(LR) Billy Magoulias of the Cronulla Sharks, friend and supporter Sarah Whitaker, MC Matt Stewart and Kristy Hodges

‘GET Trikafta on the Australian Pharmaceutical Benefits Scheme in Australia’ is the heartfelt campaign created by Kristy Hodges, a 42 year old Toormina mother with cystic fibrosis (CF) all her life.

Trikafta is a drug designed to treat patients with cystic fibrosis, a drug Kristy credits her with saving her life at this time.

On Saturday May 29 at the Toormina hotel, Kristy organized an awareness fundraiser with another local family from Toormina whose four year old daughter also has cystic fibrosis.

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While Kristy was granted access to the life-changing drug Trikafta in March 2020, it was not passed on by the Therapeutic Goods Administration (TGA) in Australia.

“Only those who are at the end of the road in their fight against CF have had access to this drug despite its successful use in the United States, Europe and many other countries around the world,” said Kristy.

“When the TGA meets again next year, the drug will be offered for placement on the Pharmaceutical Benefits Scheme in Australia,” “even then there is no guarantee,” Kristy said.

Currently, for all people with CF in Australia who do not qualify for compassionate access, Kristy said access to Trikafta would cost $ 410,000 per year.

A petition was available for signature at Saturday’s event calling for the adoption of Trikafta, which will be sent with a covering letter to Health Minister Greg Hunt and local MP Pat Conahan.

Cystic fibrosis is the most common and potentially fatal genetic disease affecting Australians with some 3,500 people living with it in Australia and one in 25 people carry the recessive cystic fibrosis gene.

The current life expectancy of Australians with CF is still 38 years (less than half that of the average Australian).

One in 25,000 babies are born with cystic fibrosis in Australia and both parents must be carriers of the recessive gene.

Cystic fibrosis causes an abnormal buildup of thick, sticky mucus in the lungs, airways, and digestive system.

Treatment requires intensive daily physiotherapy to clear the lungs and airways, countless medications, and frequent hospitalizations.

Saturday’s fund for community cystic fibrosis care will help people with cystic fibrosis across Australia and will go towards research for a cure.

Funds are still arriving at press time – we will announce the total next week.

By Andrea FERRARI

Raffles, live music and shaving fans entertained supporters that day – Lisa from Kutters Hair Design, Sawtell and Resh from fResh Cuts, Toormina.

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