Red runners to stand out for a challenge in the City to Casino fun run

A special splash of colour will hit the streets for an annual fun run on Sunday raising awareness for a disease with no cure.

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A GROUP dressed in red will not only be adding a splash of colour to this weekend’s City to Casino Fun Run and Walk, but will also be participating as part of the 65 Roses Challenge.

Lizzie Van Dongen, 24, who is living with cystic fibrosis and is this year’s 65 Roses Challenge Ambassador will be taking part on Sunday.

Van Dongen said running was huge part of her daily routine and the event was a great way to raise awareness in the community.

“People can’t really tell you have cystic fibrosis and it goes a bit unnoticed, it’s not visibly present in the community,” Ms Van Dongen said.

“It’s difficult to comprehend the damage cystic fibrosis causes to my lungs, pancreas, liver and bones when you can’t see it on the outside.”

Ms Van Dongen said people aren’t aware of the nebuliser treatments, inhalers, airway clearances and tablets she takes in order to have a normal life working as a physiotherapist in Hobart.

Abby Hauser, Liz Van Dongen and Sophie Hauser get ready for the City to Casino fun run. Picture: Alastair Bett

There is currently no cure for cystic fibrosis and despite advances in treatments and new drugs, the life expectancy for someone with the genetic condition is still just 47 years of age.

Ms Van Dongen said they are also aiming to gain attention for their campaign to have the “life-saving” drug trikafta listed on the Pharmaceutical Benefits Scheme.

She said in the US and UK it has been shown to improve quality of life and lung function, and while it’s been approved by the Therapeutic Goods Administration it currently costs more than $270,000 a year to purchase.

The 65 Roses Challenge runs throughout May with those participating encouraged to take on a challenge that involves the number 65, from walking 65 kilometres to cooking 65 recipes, with the goal of raising awareness and funds for Cystic Fibrosis Tasmania.

The term 65 Roses became associated with cystic fibrosis 50 years ago when a young boy in the US couldn’t pronounce the name of his disease and he called it “65 Roses”.

Families plead for PBS listing for ‘life-saving’ drug

TASMANIAN sufferers of cystic fibrosis and their families have launched an impassioned plea to Australian authorities over a game-changing drug used to treat the debilitating disorder.

The Australian Pharmaceutical Benefits Committee has deferred the listing of trikafta on the Pharmaceutical Benefits Schedule, amid calls during May’s Cystic Fibrosis Awareness Month for it to be made more affordable.

Trikafta is considered a potentially lifesaving drug for cystic fibrosis sufferers, but its current cost — about $277,000 a patient every year — is prohibitive.

Mandy Maree’s 16-year-old son Daniel was diagnosed with the disease at the age of two.

Cystic fibrosis is a progressive disease that causes persistent lung infections and limits the ability to breathe over time.

Mrs Maree said the listing of trikafta on the PBS would be a game-changer for Daniel and as many as 100 Tasmanians, as the drug can stop irreversible damage caused by the illness.

“Australian medical experts all acknowledge that this is a life-saving drug, a game-changing drug that for the very first time addresses the underlying causes of the disease,” she said.

She compared the drug to being like oxygen for someone suffering acute symptoms from coronavirus.

Mandy Maree and her son Daniel are fighting for the listing of game-changing cystic fibrosis drug trikafta on the PBS. Picture: Eddie Safarik

Mrs Maree said her son had appointments at the Royal Hobart Hospital’s outpatient clinic every three weeks, and was on a range of treatments to control CF.

“As a mother, and being Mother’s Day, you could take all my Mother’s Days away for the rest of my life if it meant Daniel could get access to a drug such as this,’’ she told the Sunday Tasmanian.

Mrs Maree said as well as the physical impacts, the disorder had mental health and wellbeing implications as well.

The Mount Nelson family of South African heritage migrated to Australia in 2007.

Mrs Maree said Daniel had never once complained about his diagnosis and did not want to be defined by his illness.

“He makes the most of every single day and not once has he complained,” she said.

“He’s resilient and very pragmatic.”

Mrs Maree said her son was a scholarship student in Year 11 at The Friends’ School and had aspirations to study medicine. He is also a keen sailor.

Cystic Fibrosis Tasmania executive officer Paula Wriedt said if the drug was made available, it would be life-changing.

“It’s one of the first drugs that will not only just treat the symptoms of CF ... but the great thing about it is it will treat the cause as well,’’ she said.

The Maree family wrote to federal independent MP for Clark Andrew Wilkie, who urged the federal government to make the treatment available to more people.

“Trikafta could be a game-changing medicine for Daniel and the estimated 100 Tasmanians who may benefit from this drug,” he said.

The deferral is believed to be because the government and the pharmaceutical company, Vertex, have not yet reached an agreement on price.

Mr Wilkie said in the meantime, he was urging Health Minister Greg Hunt to facilitate compassionate access which he said could save lives. 

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