Sunday, November 17, 2013

Back to square one...

Three weeks ago when I ran out of my supply of Kalydeco my life took yet another turn. I'm starting to realise that it was a 'wrong turn'.

I had forgotten how restless the sleepiness nights were, the constant state of exhaustion, the breathlessness to walk up a flight of stairs and a feeling as if someone had poured concrete into your lungs and it was beginning to set. I had simply forgotten the everyday battle that Cystic Fibrosis relentlessly forces upon you day after day after day. After previously experiencing all of these things for a gradual 22 years its actually amazing how the human brain can forget and block out such profound and long lasting physical and emotional feelings. It's not as if I can't cope but what is so unique about my experience this time is that I know what it feels like to not suffer, I know what normal life feels like, I know what my solution is, trouble is….I just can't access it anymore.

So here I am, back in the same position I was in 18 months ago with no Kalydeco and a shitty pair of lungs. My lung function has dropped from 80% to 66% and boy can I feel it. My severe reflux symptoms are back and I am forced to sit up right to even attempt sleeping. Running and exercise is a real struggle followed by huge coughing fits ( I'm sure my Zumba instructor is starting to wonder if I've caught The Plague or something!!)

I feel extremely frustrated that this issue is still pending with what feels like no progress towards an agreement between the Australian Government and the pharmaceutical company. Its extremely frustrating to live in a country that promotes it's self to be so incredibly affluent and advanced yet be one of the only developed countries in the world that doesn't have access to a life saving drug. I can write blog post after blog post, speak to journalists, TV presenters and radio hosts about all the adverse affects that I have experienced being OFF Kalydeco but in the end it all comes down to politics and business. What infuriates me the most is that the government and tax payers are already spending significant amounts of money on people like me everyday. I along with other patients eligible for life saving drugs are continuing to be a burden on the current health system. We take up hospital beds, resources, nursing staff, doctors, equipment, medication not to mention we are not working. I want to work, I want to be a contributing member of the economy and society. I want to pay taxes so we can live in a country that has a sustainable health system to help people in need. I am being denied of a healthy and successful future because two groups of people can't come to an agreement. Day after day I am told "it is a matter of process…" , but how does this help me? It doesn't. Because everyday they can't make a decision is another day of struggle. Its another day I and many others suffer when we shouldn't have to.


This still comes up on my phone :(  ….


  1. This sucks. I haven't followed your blog since all the good news was typed in the media a while ago and I thought k was approved in Australia but I guess approved and FUNDED are Definitely two different things. My son was doing so well on k that he just decided he didn't need to do his treatments anymore or even his k! And that led to a three week hospitalization! Teenagers! There's no doubt about it. You HAVE to have your kalydeco. Everyday. Twice a day. Preferably 12 hours exactly apart. Hang in there, Alex. Prayers

  2. I'm so sorry to hear about this, Alex. And here in Canada we share your pain and frustration as we have a nearly identical situation, in that Kalydeco was approved at the national level by Health Canada over a year ago for use to treat CF - but the funding must be done at the provincial level. To date the province of Alberta has taken the lead on behalf of all other provinces to sit down with Vertex and negotiate a price that they all can agree to. In the meantime only about 20 of the roughly 100 Canadians with the G551D mutation have access to the drug because of private insurance. The rest are out of luck – a most unfortunate situation that, as far as I am concerned verges on the criminal, when so many CF patients are in urgent need of this drug. Hopefully both our governments can get their act together and begin funding this life-saving medication as soon as possible. BTW, I’m linking to your blog off a site at, on the assumption that this is OK with you. Stay strong! Robert.