“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.

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