Wednesday, 6 August 2014

Cystic fibrosis & Parraroos find a voice

Over the past three months I have been campaigning to get a #YesToKalydeco & the Parraroos their dream back. In this time I've learnt a lot. Just how worthwhile it is helping get these minorities the voice they deserve.
I've also learnt just how conservative our mainstream media is.They wont commit to a story until they are sure that it will align itself with public opinion.
Finally after two weeks of fighting Federal Health Minister the tide seems to be turning.A lot of people have been campaigning on social media for a long time. Over the past few weeks its been a real focus. So much so that the Mr Peter Dutton has blocked people from posting and posts from his Facebook page. This action has actually blown up in the Ministers' face.It has galvanized the cystic fibrosis community & caused a few of our newspapers to run stories. Mr Dutton has not responded to our concerns that while 17 countries have got Kalydeco already. Australian sufferers that this drug will help have been waiting. Struggling to breathe.There is 200 people that will benefit from Kalydeco if it is put on the PBS.A drug that has been on the market for 2 years.
If they are not given access to this drug their lives wont change. They will not be able to participate in society. They will require a lot of ongoing treatment ,eventually they will end up needing lung transplants & the associated Intensive care that is a huge cost to the tax payer. If given Kalydeco these people will thrive. No longer will they be house bound .No longer will the need welfare .They wont need full time carers. They will be able to go to school ,Tafe &University adding to the economy.
Now for the Parraroos.
These guys are our best wheel chair soccer players. They have recently had their funding taken. This means that their opportunity to represent their Country at their chosen sport is no longer. This is also a result of a decision by Peter Dutton who also has the Sport portfolio. Not only is this not what the Australian taxpayer would expect. It is also discrimination. At the same time the funding was withdrawn the funding for able bodied soccer went up. These guys need to be encouraged to dream. To be able to overcome adversity and thrive in a Nation we can all be proud of.