My cystic fibrosis is worsening every day that I don’t have Orkambi drug

The word ‘Orkambi’ means nothing to most people. To anyone who has cystic fibrosis, it’s a pot of gold at the end of therainbow.

Two years ago, I was one of eight patients over the age of 14 in Ireland to take part in phase three of Orkambi trials. The day I got the phone call to participate, I cried. I then smiled so hard my jaws hurt. I had won the lotto. I might not have had millions in my bank account, but I was being given a chance of life; I had won the health lotto.

In the few years previous, my cystic fibrosis had worsened, and my lung functions had a massive 20% drop in the year before Orkambi. And while I was as active as I could be — running, cycling — it took its toll on my body. A two-kilometre run took me treble the time it took a healthy person. I needed naps to get through the day. Life was a