Orkambi

If you know me you’ll know that I love to sing, a lot. I love it so much and I see it as a huge part of my identity. I even released some music this year which was so well received by the Irish public, that myself & my band ‘The Agenda’ managed to place no. 13 on the Irish iTunes chart. We have been featured in various national publications over the last few months. Some of which have even deemed me as ‘the Irish Amy Winehouse’, which is the biggest compliment to me. It all sounds very exciting & it sounds like the sky is my limit doesn’t it? Well unfortunately that isn’t the case. Because behind all of these glamourous magazine articles & TV appearances, I am fighting a secret battle. And it’s a battle that many people in our country are also fighting. I have Cystic Fibrosis. Which I suppose if you’ve seen me perform live or even if you’ve seen me in my music video, you would never think it. I guess I’ve learned to mask it pretty well. 

Up until a couple of days ago, even I believed those articles who said that my future was bright and the world was my oyster. I believed it because I am one of the approximate 500 people in Ireland who has the Double Delta F508 mutation of CF & am therefore eligible for the new groundbreaking & potentially life-changing drug Orkambi.

We have all heard about it in the media, how some patient’s lives are changing thanks to this drug. Exacerbations, therefore hospital admissions have been dramatically reduced & people are now able to plan for a future because of this medication. And like the magazine articles indicated about me, I thought I’d be able to too. But it was announced this week that the government will not be funding this drug on price grounds. 

In the last couple of years that we’ve heard about this drug & the exciting trial results it has produced, I have never let myself get my hopes up. I never even entertained the possibility of an almost cure being close to my reach. So I carried on, put my head down & wrote songs. I refused to give my CF more time than necessary, which is quite a lot anyway. And for a little while that method worked. But alas, CF is a progressive illness & there is only so long one can put the head down & adhere to the rigourous daily maintenance required before it rears it’s ugly head.

It wasn’t until recently that I had to cancel a gig for the first time due to my health. I ended up on 2 weeks IV anti-biotics which really isn’t a walk in the park. Growing up with an illness like CF, pain & fatigue and all kinds of discomfort becomes the norm. So a long time ago I decided to rarely, if ever complain. But when I realized that the one thing in my life that has always been my light at the end of the tunnel, my music, might be in jeopardy, I think I now have a little right to complain. 

I cannot accept that this is the way my life will go. Recording music, playing gigs & ending up on treatment every few months that puts my life & career on hold for at least a fortnight at a time. The music industry waits for no one, and now I am in my 20’s, most would say ‘the prime of life’, this should be the time I am able to gig non-stop everywhere & anywhere to raise my profile as a performer, but that just isn’t possible for me. 

People used to always say to me ‘oh why don’t you do what every singer, actor etc. wants to do & move to LA, get a waitressing job and get on the scene over there?’, and my answer was always that I’d love nothing more than to be able to head off to the other side of the world to focus on my career and not have to worry about having to return when my medication ran out, or even sooner because I’d run myself into the ground by working hard & not eating properly thus forcing me to come home really sick & needing IV’s. It would be my dream to have to struggle & earn my success like so many of my idols have. Working hard is not a fear that I have. Getting really sick because of working hard is unfortunately a fear that I do have & a reality that I have to face. 

As much as I hate it, I have had to accept that CF does put certain limitations on my body that a normal 20 something year old shouldn’t have to worry about, and now I really am starting to learn that the hard way. But when I see the results that this drug has had on some patients I can’t help but wonder how it might change my life too. 

As I’m getting older my light at the end of the tunnel is slowly dimming before it ever really got a chance to shine, and Orkambi could very well be the thing that stops it from burning out. 

Maybe it won’t be the thing that saves my dream, but maybe it will, and that is something that you just can’t put a price on.