Firstly, I wanted to say how grateful I am to have so many wonderful people following CF Mummy. I am truly humbled to be a public figure to many within the CF community and beyond.
As many of you know, we have been fighting for almost 3 years to obtain access for Orkambi. Without government subsidy this drug would cost families a minimum of $250,000 per year. Then on top of that we have all our other medication costs.
A fight worth fighting, for so many of us who are eligible for Orkambi.
3 years has been a long time. In the beginning, I remember turning my head the other way, looking at the cost of a drug so pricey seemed completely out of reach, I didn’t see the point of fighting for a drug that I thought would never be accessible.
But then after many chest infections, falling ill quickly and of course the loss of more CF lives around theworld, it woke me up. It made me think, Why the hell am I not fighting for this drug.
I have two beautiful children, I want to be here for them for as long as I can, then there is my husband, he needs someone to annoy him when he’s old and grey and my list of reasons went on. If for none other than the main reason being, if there is a drug as amazing as Orkambi, then why am I not able to access it.
My journey of research began. Joining forums from all around the world, reading the stories of those who had participated in drug trials for Orkambi to watching YouTube videos of those who have been able to access the drug – it would fill me with rage that it was so close to me yet so unavailable.
I wasn’t sick enough to be able to access Orkambi through compassionate grounds – this frustrated me as why should I have to be at a point where my quality of life was very little in order to gain access.
I was so frustrated that despite looking healthy to any, the daily battle I go through being a CF sufferer is hard work. Getting olde3r isn’t something I ever envisioned, let alone become a mother. So, having CF and being a Mum is hard work. I wouldn’t change it for the world, but both of these are demanding and often things sp0iral out of my control.
This is where the invisible illness strikes.
When you look well, people think you are.
Never mind the 60 plus tables I take a day, the chest pain from coughing all night, the husky voice, the lethargy, the stomach pains and then of course the mental health side.
I wanted to fight as hard as I could to be given the chance where I am in what I think is my prime health – which I work so very hard to remain of a “healthy” status, to be able to take Orkambi and see how it can truly make a difference to me. I want to have the best quality of life and what was hard knowing this drug has positively impacted the lives of many and I could not take it. Orkambi was out of my reach and the cost was beyond ridiculous.
I began campaigning to our health minister, pleading for them to revise their decision in allowing Orkambi to be on the pharmaceutical benefits, I told my story to many indulging numerous Australia TV news channels, multiple local papers and then I took it to the streets of Adelaide in protesting to be heard.
PICKING UP MY FIRST MONTH OF ORKAMBI
1st October 2018 – FINALLY Orkambi was officially listed on the Australian pharmaceutical benefits scheme.
I am still pinching myself that this has happened. Through ongoing strength courage, passion and determination, we as a CF community did not give up ad continued to fight one hell of a battle. A battle we finally won.
So as I begin my journey in taking Orkambi, I am excited to see what this does for me personally. What will it do exactly? How will I feel? Will it do what they say it does?
As a double delta 508 CF person, I am excited that after so many years finally a new medical treatment is available for me and accessible and now on the PBS it only costs me $6.40 per month.
Recently, I asked you where you were located, how does CF effect you and my main question being, are you eligible for Orkambi? So many people- especially those who aren’t affected by CF thought Orkambi was a cure for CF. Well that is far from the truth. I was even amazed at how many Australian’s with CF are not eligible due to incorrect genotypes and liver problems, post-transplant patients and other health problems.
I have also been in touch with many who stared Orkambi and it didn’t agree with their body and they could not tolerate it so have had to come of the drug and continue their treatments as normal, minus Orkambi.
It is not for everyone.
So whilst I am jumping for joy in my own excitement for Orkambi, there still remains a large number of Australian’s and then if we go bigger, within the CF Community world-wide, who are not eligible for Orkambi. There are a large portion of CF people who have the wrong genes meaning they do not have the double delta 508, therefor Orkambi wouldn’t work for them.
Whilst there is so many exciting clinical drug trials for other genotype’s, some of these have not commenced and things take time.
This brings me to talk about the main goal. A CURE.
With a short-term win, we have a long term goal, that being to CURE CYSTIC FIBROSIS.
The day I get to wake up and know that I don’t need to do a nebuliser, take my tablets, do physiotherapy and so on, that is the real end goal.
It brings me to talk more about my role as the ambassador for the Cure4CF Foundation.
In Australia there is approximately 3000 people living with Cystic Fibrosis and this number is increasing. Worldwide, there is 70,000 people. It makes me think, surely, we can close the book on Cystic Fibrosis.
Cure4CF is a National foundation founded here in Adelaide that is committed to funding CF research that looks to develop therapies or cures that will result in an increase in average life expectancy of CF people. How exciting is this!
As a CF person, this excites me, knowing that we have scientists, professors and researchers working on multiple projects with the end goal, to Cure CF.
In order to progress with their research, funding is required to allow them to further progress and with numerous projects and teams working on ways to cure CF, it is important that they are high-quality projects and have the access to funding.
Having CF and knowing Cure4CF exists, not only gives me hope but it allows me to see the potential that the light at the end of the tunnel is there, we just need to find it
With the foundation funding it allows research to be done that looks to develop develop therapies or cures that will result in an increase in average life expectancy of people with cystic fibrosis with consideration given to quality of life.
Life expectancy has never sat well with me; I am not a milk carton with a “use by date” and quality of life – there is life yes, but then there is quality, being able to wake up, breathe and seize the day with no setbacks.
I am proud to be an ambassador for the Cure4CF foundation, it is a wonderful role I hold.
My 40th birthday is in a decade and I know being an ambassador for the foundation will allow me to stay close to the cause and to keep my strength and determination strong.
To those who are working behind the magnifying glass, you are doing amazing things.
Let this decade be the time to find the cure for Cystic Fibrosis, then my 40th birthday will be yet another beginning of a new way of life.
To find out more about Cure4CF visit:
