The lucky country
The Lucky Country; a phrase used to describe everything that is great about our nation, Australia. A continent in which we have access to clean drinking water, fresh food, and advanced medical services. An island in which we can walk down the street and feel safe. A country in which we can sleep soundly in our beds at night without hearing gun shots, without the fear of war.
Yet here I am, still waiting for Orkambi to be approved. My fellow CFer’s are waiting, suffering, and dying, while the Australian Government and Vertex, continue to negotiate the cost of a medication which has proven to reduce hospitalisations by 61%, reduce lung damage by 42%, and change lives. Vertex wont budge on price, and the Government wont pay. Vertex have offered a temporary access scheme, and the Health Department didn’t respond. We’re not getting any closer to an agreement and both sides have so readily put a price on the lives of 1000 Australians. How dare they put a price on our lives and how dare they put a price on my life.
Every day that we have to wait, we cough more and we develop infections. Infections lead to irreversible lung damage and lung damage leads to death. In 2014 alone, 34 people with CF had double-lung transplants, and 19 deaths were recorded. That’s 19 too many if you ask me. Our health and our lives are at risk, unnecessarily.
The Lucky Country; where people from war torn countries travel through the harshest of weather, across the seas, risking their lives to live here. Yet there are ground breaking medications, treatments, and therapies, available that the chronically ill can’t access, due to unaffordability. Treatments for Cancer, MS, Cystic Fibrosis and so many other debilitating illnesses, are being kept out of our reach because we can’t afford to pay the $250,000 per annum price tag. That’s half the average house. Just to stay alive. I spend $400 a month on medication, and now I’m supposed to pay an additional $20,000 per month? That is utterly unacceptable.
The Lucky Country; a place where the previous Health Minister used $12, 000 to charter a jet to the Gold Coast. That could have covered my weekly supply of Orkambi. A country in which the Australian Government were about to spend $160 Million on the plebiscite, a vote that doesn’t even count for anything. It will only cost $100 Million for a year supply of Orkambi for the 1000 people who need it. A nation that invested $29.5 Billion toward the National Broadband Network. $29.5 Billion, that could cover most medications that are waiting to be listed on the PBS. Readily available medications improve the lives of thousands of Australian’s, reducing the cost of hospitalisations, and increasing many patients ability to work. More people working means more people paying taxes, more people paying more taxes means more money for the Government, and the economy continues. Its not rocket science. Let’s not even mention that the CEO of Vertex earns $36 Million per annum. Seriously, are you kidding?
The Lucky Country; where recently the use of Kalydeco, another ground breaking CF drug, was approved for children between the ages of 2 – 5 years. Yes, while I am so relieved to hear this and so very happy for those children and their families, let’s not praise the Australian Government too much. All they did was help 30 children. A very small portion of the 3000 Australians living with CF. 30 children who will more than likely have access to even better medications in the future and even perhaps live to see the day a cure is found for CF. And they managed to get approval just before the Orkambi Protest in Canberra. Conveniently alleviating a little heat and transferring the spotlight. Yes, I am grateful access was granted, but I remain disappointed and frustrated that there are still 1000 Australians waiting anxiously for Orkambi. 1000 Australian’s waiting to see some relief. 1000 Australian’s anticipating when their life will be valued as more important than speedy internet.
The Lucky Country; a country trailing behind Germany, France, and the US where Orkambi has already been approved for use. But no, not here in Australia. So yes, we live in “The Lucky Country”, but right now I feel there are better options out there.
My name is Jackie Hodson, I’m 25 years old, and I have Cystic Fibrosis. People often ask if I wish I had been born healthy instead of with CF. My answer is always the same; no. I am the person I am, because of this devastating disease. I am grateful, I am heartfelt, I am strong, and I have learnt to appreciate every single moment in this magical world. I know that no matter what number is put on my life, I will have experienced more happiness and love in my lifetime than anyone who might live for many years more than me.