Western Australians Isobel Donaldson (12) and her sister Ruby (10), live with cystic fibrosis (CF). They and their parents are now waiting anxiously for the government to strike a deal with Vertex Pharmaceuticals for access to a lifesaving drug called ORKAMBI® on the eve of 65 Roses month.
It’s official … ORKAMBI® is back on the Pharmaceutical Benefits Advisory Committee (PBAC) agenda and it’s now or never; not only for the Donaldson’s, but the whole of the CF community to unite and fight for what is rightfully ours, says Nigel Barker CEO of Cystic Fibrosis Western Australia (CFWA).
For too long now, our community’s voice has been ignored, so on Monday 30th April, the CF community will march on Vertex Headquarters in St Leonards. Vertex must understand that we expect them to negotiate in good faith, come to the PBAC table with a willingness to find a financial solution, and work towards achieving access to ORKAMBI® for our community.
The Protest March will muster in Martin Place from 7.00am on Monday 30th April. At 9.00am we will begin our 6.5km trek to Vertex across the iconic Harbour Bridge and along the Pacific Highway to St Leonards and Vertex’s Australian headquarters. We will have a big crowd to make a big noise and a big statement that cannot be ignored. “We need access to life saving drugs now!”, said Nigel Barker CEO of CFWA. “Knock back after knock back because of price has worn everyone down and most importantly it is the CF community that has really suffered. People with CF who have two copies of the F508del gene mutation have been denied a drug that has been available now in the US for over two years.”
The Federation wants to help people join the Protest March so for those on the road CFA will administer a reimbursement $100 per person for people travelling from WA. If you’d like to attend the protest please click here. For more information contact Cystic Fibrosis Australia at melanies@cfa.org.au.
On 3rd July it will be the fourth time ORKAMBI® has been reviewed by the PBAC for reimbursement and the Donaldson’s and the CF community fears that this could be the last submission by Vertex. If Vertex pulls out of Australia we don’t just lose access to this life saving drug – the Vertex clinical trials here in Australia may cease as well.
“Now is the time to mobilise and for the next few months the CF Associations around Australia that form the CF Federation will be calling on the CF community to get involved and show how loud our voice can be. Our Government needs to know we are dissatisfied with their efforts to negotiate so far and Vertex needs to understand that the ‘drug hold back’ and unreasonable pricing is cruel and unconscionable.” Says Mr. Barker.
Our Protest March is a personal crusade for all those who have been denied ORKAMBI® for too long. Everyone is welcome and for our regional and interstate community we will be carrying balloons with names and ages of people who need ORKAMBI® now.
Vertex has two ORKAMBI® submissions before the PBAC in July. One is for people aged 12 and over and the other is seeking reimbursement for children from the age of 6 years. We have an important crusade for more 1,200 Australians and this could be out last chance. So for Isobel and Ruby we need both submissions to be successful.
There are a few key dates to add to your diary and these include…
27 April 2018: Consumer Portal opens for comment (briefing document coming soon)
30th April: Community Protest March
5 June 2018: Consumer Portal Closes for comment
3-5 July 2018: PBAC Meeting in Canberra
17 August 2018: PBAC Announcement
It is now or never. Let’s hope that we can work together to achieve access NOW so people with CF NEVER have to worry about being denied access to the best drugs and treatments again.
Please publicise our Protest March as we need the community to get involved, be part of the solution and march for what is rightfully ours … the best drugs and treatments for people with CF.
To learn more about why the Australian CF community needs unrestricted access to ORKAMBI® and to interview families caught in the midst of this struggle contact Karen De Lore at CFWA by email at marketing@cfwa.org.au 08 6457 7333.