Wednesday, 6 August 2014

Diary for cystic fibrosis

It's another sleepless night, so I thought I'd pop over to the Health Minister's facebook page and continue to ask for action for people with CF to access Kalydeco. I have been blocked from his page for weeks, along with a number of others. All I did was share my story and ask for action. Anyway it appears I can post now as long as I don't mention several key words like Kalydeco.

So here's my post in case it is not considered acceptable and gets deleted from his page. I vow to continue to fight for 200+ Australians who desperately need a lifesaving medication to treat Cystic Fibrosis, despite the fact I am off my feet, completely debilitated by a flare up of this condition myself. I have only been diagnosed for a few years (at the age of 42) and it is inconceivable to me that there are young people out in the community who have had to battle this horrendous condition all their life. It breaks my heart when I think about what they have to go through. To think this horror could be spared by a miracle medication that is the next best thing to a cure. I am unable to work and look after my children. I am trying to avoid yet another hospital admission, because the reality of this condition is every infection is potentially life threatening. Imagine looking into your childrens' eyes and seeing fear... concerned about whether their mother is going to get better and be taken away from them for another 2-3 week hospital admission. While there is not yet evidence to suggest this medication will help the type of CF I have, it gives me so much hope for the future as more clinical trials continue. Knowing that young people with CF in the community could be spared this horror, I urge you to do everything in your power to make this a reality.
Jul. 25, 2014
While I've been lying flat on my back for the past three days dealing with a CF flare up, completely debilitated as I fight one of many resistant bugs that now live in my lungs, I think of the decision makers in this lengthy drawn out process to get Kalydeco listed on the PBS. They have the lives of 200+ people with Cystic Fibrosis in their hands. The truth is if any of their lives were affected by this horrendous disease, then this wouldn't even be an issue. People would have access and lives would be saved. Two years and still no outcome. To think in Scotland, Kalydeco was declined listing and then 3 days later it was approved, makes the situation here in Australia incomprehensible.