In primary school, each lunch time a friend of mine was a picture of concentration as she carefully prised apart a tiny capsule, poured its powdered contents onto a spoonful of pureed apple, put it to her mouth and swallowed.
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Every time I watched this a little shiver would run down my spine.
I hated fruit. Especially the mushy kind.
Back then, I didn’t know she had cystic fibrosis. I also didn’t know she would die at 22.
I thought a lot about my friend this week.
Firstly with the deeply sad passing of Wagga woman Tamara Easton, and then with the announcement on Friday that Orkambi, the “little pink pill of hope”, had finally been approved for the PBS.
Orkambi is not a cure for cystic fibrosis, and it is not suitable for everyone with the genetic condition.
But for the roughly 1000 people in Australia carrying the F508del homozygous gene mutation, it promises to extend their life expectancy and improve their quality of life.
And that is a nice note to end a difficult week on.
All the best, Ross.