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Media Release

                                                  

“MEDIA RELEASE”       

‘For Immediate Release 21/7/14’

“Health Minister blocks concerned Cystic Fibrosis patients and parents on social media”

#YesTo Kalydeco, a patient driven lobby group have turned to social media to raise public awareness and express their concerns over the long delays in accessing Kalydeco, a lifesaving treatment for Cystic Fibrosis via the Pharmaceutical Benefits Scheme.(PBS) Just over a week ago, the office of Mr Dutton took the rather unusual action of blocking anxious parents from sharing their stories on his Facebook page.

Faye Upston, a patient with Cystic Fibrosis, was bitterly disappointed by the Facebook ban. “The Health Minister is supposed to be looking out for our health needs and representing us, but this move to ban us from having a say makes it quite evident the opposite is true. The Cystic Fibrosis community in Australia have been disenfranchised, this is more than deeply concerning, it’s a breach of human rights.”

When asked to comment on this matter, Mr Dutton initially claimed the #YesToKalydeco group were part of a campaign driven by Vertex Pharmaceuticals. For the record, #YesTo Kalydeco has no affiliation with any of the decision makers in this process.

#YesToKalydeco has continually asked the Health Minister, Hon Peter Dutton, to intervene on ongoing negotiations between the Pharmaceutical Benefits Advisory Committee (PBAC) and Vertex Pharmaceuticals, to ensure that those who need Kalydeco are given access only to receive the response that discussions continue. Members of the Cystic Fibrosis community are becoming increasingly anxious and frustrated about the lack of transparency of these discussions and the fact there is no time frame for resolution.

Kalydeco is a ground breaking lifesaving medication that treats the underlying cause of Cystic Fibrosis, a chronic degenerative disease that primarily affects the respiratory and digestive systems. Described by many as the “wonder drug” of the twenty first century, Kalydeco treats the underlying cause of a rare form of Cystic Fibrosis (G551D) affecting 200+ Australians. It essentially switches off the gene mutation stopping the disease in its tracks. At a cost of $300,000 per year, without listing on the Pharmaceutical Benefits Scheme (PBS) this medication is unaffordable for those who need it.

Cystic Fibrosis is the most common genetic disorder in Australia, with 1 in every 25 people carrying the defective gene. One person dies from this disease every 9 days in our country. According to the 2012 Australian Cystic Fibrosis Data Registry Report, 32 Cystic Fibrosis patients received a double lung transplant and 40 deaths were recorded in that same year. We can estimate that during the 24 months of discussions there have been approximately 80 deaths caused by Cystic Fibrosis.

We cannot sit idly by whilst we get sicker due to this delay. We are calling on the greater community to stand up and help fight for those who are most in need at the time they need it most.

“ Ends “

 

 

Blog Post -Exercise Hacks to Motivate

I don’t know about you but I have neither a love or hate relationship with exercise. I’m somewhere in between. All I know is I usually feel better for doing it. I didn’t always feel this way. I once lived and breathed exercise. It was my career. I was an exercise scientist, spruiking the benefits of exercise to all my clients. I loved it and practised what I preached. I felt like it was my calling. Then seven years ago it all changed. I got diagnosed with a lung disease and exercise suddenly became a chore. The shoe was on the other foot. I began to understand some of the obstacles my clients used to talk about in regard to exercise because I was facing some of those same challenges myself. Exercise became a real effort, but I knew it was something I had to continue with because my health depended on it. I learnt how hard it can be to get back the exercise habit when you’ve had a break from it for a while. Dealing with regular chest infections meant I was often falling off the exercise wagon and having to find my way back step by step. You know what they say though, “through adversity comes some of the greatest lessons”. I totally agree with that. If I were to pick out one thing that has helped me the most it’s the realisation that I had to make exercise a “non negotiable” Much like brushing my hair or doing my teeth I treat exercise as something that I automatically do as part of my day. I remember shortly after I was diagnosed rebelling against doing what I should be doing. I went a day without exercise and it was an awful day. My energy levels were terrible and my lungs were so congested I coughed so much more than usual. From this moment onwards exercise was a no brainer.

Exercise is a part of my life. Don’t get me wrong I wake up most mornings and momentarily think I don’t feel like doing it, but I just get on with it. I can’t rely on motivation to get me through because that seems to fluctuate from day to day. So I find having a routine time of  the day to exercise helpful. If I can’t exercise at my usual time due to some other commitment then I build it into another part of the day. Today for instance I was all out of whack. I couldn’t exercise at my usual time of 9am so I decided to break my exercise routine into two blocks of 15 minutes instead of one block of 30. There is plenty of evidence to support smaller blocks of exercise anyway. In fact I saw an interesting study done on the benefits of 6 minutes per week. Here’s the link. http://www.abc.net.au/catalyst/stories/4319131.htm   It’s worth a look as it is considered quite a reputable study. However I will say I don’t believe there is one exercise plan to fit all. It’s about what works for you. I do however believe there are a number of key components that make up an ideal exercise program. These include flexibility, strength, and cardiovascular endurance. My plan consists of a combination of walking or an indoor circuit, weights and stretching. If I have a break from exercise, usually caused by a flare up with my health I start small when I resume my plan. I may start with blocks of 5 minutes of exercise, and build up from there until I’m doing 30 minutes of exercise most days of the week. I intermittently review what I’m doing so I don’t get bored and I don’t get stuck in an exercise plateau. Sometimes it’s about making one small change that can make all the difference. I’m a bit of a fan of interval training to build fitness. I still do some steady state training which is continuous e.g. walking for 20 minutes at a set pace but on some days I mix it up with some short bursts of high intensity exercise e.g. 1 minute and then recover for a minute before starting another interval. I find it rebuilds my fitness quicker than the continuous steady state training.

Finally, having some kind of accountability is a huge asset. I have a team of allied health professionals that I’m accountable to at least each month and let’s just say they leave no stone unturned when it comes to my health. Having someone to report into helps keep me on track.

So if you’re starting out with exercise or finding it hard to regain the exercise habit I’d say the following.

  • Set up a plan that is realistic and adaptable
  • Try making exercise a non-negotiable
  • Set up some kind of accountability
  • Enjoyment is a bonus – as long as it’s sustainable you should be right!Best wishes with maintaining the exercise habit. Just remember you are not alone. Everyone on the planet has to find some way to exercise.