While Vertex and the government squabble over the price of the ORKAMBI, the CF community is left playing an anxious waiting game
Grey skies and a little rain couldn’t dampen the spirits of around 100 protesters marching on the offices of Vertex Pharmaceuticals, demanding that they negotiate in good faith with the Government to get Orkambi listed on the Pharmaceutical Benefits Scheme.
Western Australians Nigel Barker and Taryn Barrett were among the protesters who had flown over to Sydney to make sure that the company and the Government got the message that WA needed Orkambi too!
Nigel Barker CEO of CFWA said that “Orkambi is only the second drug in the world to address the underlying causes of cystic Fibrosis; a recessive genetic disease that affects nearly 4,000 people in Australia and the very first drug for over 50% of patients who have the most common mutation.
While Vertex and the government squabble over the price of the drug the CF community is left playing an anxious waiting game. People with CF who have two copies of the F508del gene mutation have been denied a drug that has been available in the US for more than two years. In Ireland, United States, France, Germany and Italy, Orkambi is widely available. Australians need access immediately.”
3 July will be the fourth time ORKAMBI has been reviewed for reimbursement by the PBAC and we fear that this could be the last submission by Vertex. If Vertex pulls out of Australia we don’t just lose access to drugs – the Vertex clinical trials here in Australia may cease as well.
Demonstrators carried balloons with the names of children living with CF who could not attend the rally.
Over 1 million people in Australia are carriers of a devastating disease and don’t know it.
The median age at death of someone living with Cystic Fibrosis (CF) in Australia is just 31.6 years of age compared to the general population which is 81.65 years of age. There is no cure.
Orkambi could play a vital role in closing that gap, but at around $250,000 per person per annum for life it doesn’t come cheap. But what price does this government put on a child’s life?
Getting Orkambi listed will help move us towards our vision of Lives Unaffected by CF. By this we mean that every child born with this disease will be able to reach their full potential unencumbered by this disease.”
Mr Barker added that, “Over one million Australian adults carry the recessive gene that causes CF but don’t know it. If two of those people get together and have a baby then there will be a one in four chance that the baby will be born with a double recessive gene and have CF.”
CF affects every organ in the body but primarily manifests itself in the lungs where it causes a build-up of thick sticky mucus. This can become infected leading to permanent damage and in some cases the need for a lung transplant.
You can help by making your voice heard on the PBAC Consumer portal here.