Building Cystic Fibrosis medication awareness on the Coffs Coast

(L-R) 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 life-long Cystic Fibrosis (CF).

Trikafta is a medication designed to treat CF patients, a drug which Kristy credits with saving her life right now.

On Saturday May 29 at Toormina Hotel Kristy hosted an awareness fundraiser with another local Toormina family whose four-year-old daughter also has Cystic Fibrosis.

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While Kristy was granted access to the life changing Trikafta medication in March 2020, it has not been passed through the Therapeutic Goods Administration (TGA) in Australia.

“Only those who are at the end of the road in their battle with CF have been granted access to this drug despite its successful use in the US, Europe and many other countries worldwide,” said Kristy.

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

Currently for any Australian CF sufferers who do not qualify for compassionate access, Kristy said accessing Trikafta would cost $410 000 per year.

A petition was available for signing at Saturday’s event petitioning to have Trikafta passed, which will be sent along with an accompanying letter to Greg Hunt Minister for Health and Pat Conahan local MP.

CF is the most common, life-threatening genetic condition affecting Australians with some 3,500 people living with it in Australia and one in 25 people carrying the recessive CF gene.

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

One in 25 000 babies are born with CF in Australia and both parents must carry the recessive gene.

CF causes an abnormal build-up of thick and sticky mucus in the lungs, airways, and digestive system.

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

Saturday’s funds for Cystic Fibrosis Community Care will help CF sufferers Australia-wide and go towards research to find a cure.

Funds are still coming in at time of going to press – we’ll announce the total next week.

 

By Andrea FERRARI

 

Raffles, live music and head-shaving entertained supporters on the day – Lisa from Kutters Hair Design, Sawtell, and Resh of fResh Cuts, Toormina.

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