Campaigner Carlie reflects on talk with Vertex CEO
Hi CF world! I’m Carlie, I’m 29 years old and live in Kent with my husband Chris and our two-year-old son Jude. I work part time and more recently have been campaigning with the Cystic Fibrosis Trust for access to life-saving precision medicines.
I was diagnosed with cystic fibrosis just before my tenth birthday, and a lot of my childhood was spent coughing until I was sick, dealing with terrible stomach cramps, being the thinnest, shortest and palest girl in school, and of course sprinting to the toilet soon after eating anything! This led to me avoiding socialising with friends at all costs and I was incredibly shy and embarrassed about who I was.
“I locked it in a box in my head, telling no one, passing everything off as a common cold, not accepting or believing anything was the matter with me.”
When I finally got my diagnosis the arrival of Creon 10,000 made all other parts of CF seem manageable and so I locked it in a box in my head, telling no one, passing everything off as a common cold, not accepting or believing anything was the matter with me. I continued being painfully shy throughout school; when I was studying for my A-levels I was admitted in for IVs, something I passed off to school friends as a holiday! I probably partied way too hard at university, still not focusing on my health and telling everyone who tried to ask if I’d done any nebulisers that week that, “I’ll be okay, if I don’t think about CF then it leaves me alone”. But the older I got and as my naive, teenage ways started to dissolve, I became absolutely terrified of CF and everything that it involved and could involve in the future.
I met Chris at secondary school and we then went to university together. I slowly opened up to him about why I was constantly coughing and popping pills. I remembering wringing my hands together as I told him.
“I have something wrong with me, I have cystic fibrosis,” I said, which I followed with, “please don’t google it and if you don’t want to be my boyfriend anymore then that’s okay.” But his response turned out to be a slight anti-climax.
“Alright cool, I’ve got IBS”
I’d told the first person I had CF, but in reality me and the Carlie who had CF were still two different people. Until now...
“As soon as I held Jude in my arms I knew I had to grow up and look after myself.”
Fast forward 11 years and I am beginning to accept I have this genetic condition, I’m learning to live with CF and not fight it. I’m understanding that taking medicines and spending time doing physio and nebulisers do not have to trigger panic attacks; they’re tools to help me. If I take them the chances of me becoming ill drop and when I do become unwell it probably isn’t going to be as extreme as if I hadn’t had the help of the meds.
My outlook on CF changed the moment I found out I was pregnant with Jude. Something that I didn’t think would ever happen for me especially so soon after two years of harsh treatment for Mycobacterium abscessus. As soon as I held Jude in my arms I knew I had to grow up and look after myself. I also had an overwhelming sense of fear that I would be too ill to look after him or, even worse, die when he was still growing up.
“With this feeling of fear and acceptance came confusion and anger that I couldn’t get my hands on drugs that could potentially keep me well for longer and allow me extra years with my family.”
So I decided to change. It’s taken me two years and I’m nowhere near to being a perfect patient but I’ve made a real effort to turn my nebulisers into a habit, to call my CF team when I feel I’m becoming ill and accepting (without too much of a fight) when they tell me it’s time for IVs.
With this feeling of fear and acceptance came confusion and anger that I couldn’t get my hands on drugs that could potentially keep me well for longer and allow me extra years with my family. I decided that I wanted to try to do as much as I could to make people more aware of CF and fight for everyone to get these drugs, and not just at the point where they had become seriously unwell. I took a simple photo of some of my daily meds and uploaded it to social media. It gathered over 1,000 shares and prompted local newspapers and news channels to contact me.
Since then I’ve been actively campaigning for drugs like Symkevi and Orkambi to be provided to people with CF on the NHS. I’ve been lucky enough to be given the support of platforms like BBC Radio 5 Live, Radio 4’s Today show, the Guardian and Times newspapers and more recently have been writing a diary for the Daily Express to try to inform more people of cystic fibrosis, our daily struggles and the fact that now so many of us are waiting on a deal between the NHS and Vertex.
“I attempted to convey what it was like to live with CF and described to him the mental strain of knowing there are drugs there to help us, yet having to become incredibly unwell in order to access them.”
Thanks to the amount of people hearing my story and then relating to the fact that ultimately I am just a mother wanting to see my little boy grow up but with no real control over my genetic condition, I managed to turn one of my goals into a reality when Secretary of State Matt Hancock agreed to meet me and listen to me as I explained to him about the reality of CF and begged for his help. And that’s how I’ve ended up here today, at the Cystic Fibrosis Trust HQ, sitting down with David Ramsden, the Trust’s Chief Executive, speaking to Dr Jeffery Leiden, Chief Executive of Vertex Pharmaceuticals.
I attempted to convey what it was like to live with CF and described to him the mental strain of knowing there are drugs there to help us, yet having to become incredibly unwell in order to access them. Dr Leiden expressed his understanding of how we are all feeling about the current deadlock, and encouraged the community to keep fighting while they keep working alongside NHS England to get a deal done.
“It’s my goal to ensure that in those meetings they are thinking about faces and not statistics.”
Out of all this I hope that both Matt Hancock and Dr Leiden think of me and my little boy as representatives of all of us with CF and our families. It’s difficult to gain momentum and a loud voice when we all have to be kept separated from each other. It’s my goal to ensure that in those meetings they are thinking about faces and not statistics, that they are thinking about saving lives and not money. Thinking about all of us with CF who are parents, those who want to be parents, those parents who are bringing up their own CFer and worrying about what the future holds.
We are lucky enough to be the generation where CF could truly be more manageable and I refuse to let this moment pass us by. We all deserve the chance to have control, stability, a better quality of life and possibly even a longer life. Jude is my motivation to stay well. He’s allowed me to have a better relationship with CF, gain self-confidence and understand the importance of doing my absolute best to stay well, and so I owe it to him to continue on this fight until we all gain access to life-saving drugs.
And we will one day very soon.
Read the statement from David Ramsden, Chief Executive at the Cystic Fibrosis Trust, following the meeting on Tuesday 4 September.