CEL Masthead Winter 18

Rallying for a longer, better life

Carly Dewey

When Dash was diagnosed with Cystic Fibrosis, we were told that the news wasn’t all bad.

You see Dash has a gene mutation (thanks to his Dad) that isn’t as bad as the stinky mutation he got from his Mum. This mutation is called a gating mutation. Basically, it means that the problems with his cells aren’t as bad as they could be. This doesn’t guarantee him an easy run. It doesn’t mean his CF isn’t as bad as someone with a different mutation because each individual case of CF is different. Each body reacts differently and every person is dealt different cards in terms of their overall health. 

What it does mean, is that there is a medication (Kalydeco) available to him that will help correct this mutation. Although when I say ‘available’ I mean it exists. It’s being given to kids just like him aged two and up all around the world. Here in Australia however, he’s being made to wait until he is six. 



Late last year the Pharmaceutical Benefits Advisory Committee (PBAC) and the Department of Health decided to defer the availability of Kalydeco through the Pharmaceutical Benefits Scheme (PBS) to 30 eligible children in Australia. They cited things along the lines of ‘not enough evidence of incremental benefit’… What they meant was, ‘too expensive’. 

The drug we’re talking about is the first drug of its kind. The first drug that has become available to people with Cystic Fibrosis that actually targets the cause of Cystic Fibrosis and doesn’t just treat the symptoms.

When he is healthy, Dash takes a minimum of 12 doses of medication daily to help with his symptoms. Every morning he has the vitamins he can’t absorb from his food through a syringe, he has a dose of prophylactic antibiotics so the bugs he picks up from the outside world hopefully don’t turn into hospital admissions. Every night he has another dose, just to be safe.

Every time he eats something I have to do some quick calculations in my head. How many grams of fat are in this food? How much will my toddler actually eat? How long will it take him to eat this? Once I’ve made my best guess, I dose him up with pancreatic enzymes to make sure he gets the most out of the food I’ve prepared and prayed that he would swallow (not that he’s terribly fussy when he’s feeling well). Before bed we do a round of hypertonic saline through the nebuliser followed by some percussion physiotherapy, because bouncing on the tramp in the morning just doesn’t really cut it.


When he isn’t well, it’s always a trip to the Hospital. Oh how we dream of having a sick baby we can treat with chicken soup! For now though, as soon as I notice anything that’s off we trek down to the hospital, check his vitals, his development, his chest, his stomach and sputum (sputum samples are the best part, ask any CF Mum or patient) and then we make a call on how much more medication and treatment he needs based on what we find. 

At the moment there is a life expectancy on my son’s head that is a good 40 years shorter than mine. What we know for sure is that in order to increase his number, we need early intervention. We need to protect his lungs as soon as we can. And we can! If only there wasn’t a politician in the way.

The drug Dash needs costs more than $200,000 per person, per year. Our Government and the pharmaceutical company who make Kalydeco can’t come to a financial agreement and so, we wait. We wait while children in the United States, Great Britain and several other European countries are ensuring their life expectancies are closer to that of the average child because their Governments believe the evidence we all already have.

While we wait we administer medications and treatments that are helping his symptoms, when possibly, we could forget them all in place of one life changing drug. While we wait we pray and wish and hope that we avoid chest infections and subsequent lung damage.

We’re rallying with the wider Cystic Fibrosis community at Parliament House at 7am on Tuesday 7 February 2017 to hopefully convince the new Health Minister to get out of the way. To give our son and 29 other children a fighting chance at a long and wonderfully healthy life.  

Hopefully, we’ll see you there and hopefully, we can make a difference. 

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