Dancing, golfing, and hiking the Ochil hills: one year of Kaftrio

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It's been a year since Kaftrio was approved for use in the UK. Here are your stories of a year with the life-changing drug

Kaftrio is a triple-combination therapy that was licenced for use in the UK on 21 August 2020. It is suitable for people are aged over 12 who have two copies of the F508del mutation or one copy of F508del and any other mutation. Kaftrio has been shown to significantly improve lung function for many people with CF.

Unfortunately, about 10% of the CF community are unable to take Kaftrio. The Cystic Fibrosis Trust is continuing to fund research into treatments that will help everyone with CF. We won’t stop until everyone with CF has access to the best possible treatments.

Here, six members of the CF community share their experiences of a year with Kaftrio, a drug that has changed lives.

"Kaftrio has given me a second chance"

I’ve always had a passion for performing arts. But cystic fibrosis made it hard. During dance shows, there were times when I would get out of breath and would need to leave the show.

In June 2020, I  suffered a hepatic encephalopathy, which is when your liver can’t flush out toxins and it causes them to build up in your blood stream. At only 22, I was suddenly talking to consultants about having a liver transplant to save my life. My family were all preparing for the worst. I remember saying to my consultant, “I don’t want to die.”

I started Kaftrio in November 2020, a couple of months after it was approved in the UK. Now I feel amazing. My liver is stable, which means I don’t have to have a transplant. It’s like a miracle. I know everybody with cystic fibrosis says this, but it’s so true. I went from nearly dying to feeling great - the best I’ve felt in years.

I’ve been able to return to my passion. I can do a full dance workout now, which I just couldn’t before. I can walk up a flight of stairs now without any problems with my breathing and my mental health has skyrocketed for the better as well. I’m hoping to so much more hopeful for the future.

Kaftrio has given me a second chance. It’s just so crazy how it’s turned my life around. I’m so grateful to everybody who campaigned and pushed to make this available. Without them, I might not be here.

Jessica Zdanowicz, 23, Chesterfield

“My first thought was that it was truly going to change my life"
Jack Harris and family

When I heard that Kaftrio had been approved for use on the NHS, it was like all my birthdays and Christmases had come at once. My first thought was that it was truly going to change my life, along with all those eligible to take it.

I started taking Kaftrio on 20 October 2020. The change in my quality of life has been miraculous. I can enjoy things more knowing that I won’t get out of breath so quickly. I can laugh without breaking into a coughing fit. I’m a keen golfer, and I can now quite happily complete a four- or five-hour round of playing, keeping pace with everyone else and not getting out of breath or needing to use a buggy to get around.

I’d like to say, on behalf of the entire CF community who are eligible for Kaftrio, a huge thank you to Vertex, the NHS and the Cystic Fibrosis Trust for all their work and effort in securing a deal so quickly. I now have more time to spend with my wife, Jenny, and our five-year-old son, Noah. All in all, Kaftrio has been a life changer, a lifesaver and a miracle.

Jack Harris, 32, Ilkeston

Read Jack's full story here

"It was life-changing at first – but it wasn’t the ‘miracle drug’ I’d hoped it would be”
Alexandra

For me, Kaftrio has been a bit of a mixed bag. My initial experience was life-changing – I didn’t cough for three months, and my energy levels increased. But despite this, Kaftrio wasn’t the ‘miracle drug’ I’d hoped it would be.

In late July 2020, I was admitted to hospital after experiencing some strange symptoms – a weird sore throat, and phlegm stuck to the back of my throat that felt really suffocating.

I’ve never been so unwell – I emerged seven weeks later, worse than when I went in. I tried five different types of antibiotics, but nothing seemed to help. Eventually I decided to leave hospital and just concentrate on getting better.

I’m grateful for what Kaftrio has done and what it’s allowed me to do. But I think the side effects need to be heard - because for some it’s not all roses and they can feel bad for speaking out or sad that it hasn’t worked for them, whilst the narrative is everyone else raving about it.

My life has been beautiful, and I am surrounded by my wonderful garden that I now have had the energy to do in my own way. I’ve more of less got a cottage industry going with my cards and artwork. So maybe these were supported by Kaftrio, but not just Kaftrio.

Alexandra Andrews, 45, Nottingham

Read Alexandra's full story here

Deborah
“It gave me the ability to become a mother”

I was so excited to start Kaftrio. I’d seen posts on social media of how amazing the drugs are. I was very underweight, at only 39kg, and was coughing constantly and extremely tired all the time.

I saw a difference after my first dose. My breathing became lighter and my cough started to improve almost immediately.

I no longer worry about my future, I don’t fall asleep every night wondering if I will wake the next morning. I have such a better quality of life, my lung function and weight have improved – and I’ve been given the greatest gift of all, a little miracle baby. My baby girl is due in November. Kaftrio has given me a life I never dreamed of – it gave me the ability to become a mother.

Deborah Hutton, 27, Antrim

“My gran is absolutely over the moon”

Dumyat is in the Ochil Hills, not very far from where I live in Stirling. It’s 418m high, so it’s pretty big, not a tiny wee hill!

Andrew in the Ochil hills

It took us about two hours to get to the top – me, my girlfriend, Mum, Gran and the dogs. It isn’t that long ago that I wouldn’t even have attempted it, but since Kaftrio, I’ve felt really amazing.

When Kaftrio was first introduced in England, my gran got straight in touch with the Scottish health secretary, saying she wanted it in Scotland for her grandson! She doesn’t take no for an answer. I said to her, “just wait, Gran, it’ll come up here.” She’s absolutely over the moon with it; we all are.

I put a wee rock in the beacon at the top of the hill, to mark the achievement. It’ll serve as a reminder of just how far I’ve come – and just how far, now, that I can go.

Andrew Parry, 24, Stirling

Read Andrew’s full story here

“Knowing I can now achieve anything is a really powerful feeling”

I knew that taking Kaftrio was going to be a monumental time, in my life and that of my family. It was something I could only ever have dreamed of. I just felt lucky to have the opportunity.

I was fairly lucky with my health up until I turned 30, but then I saw a slow and steady decline sneak into my life. I was coughing until I was sick most days, and I was unable to do any exercise.

I started taking Kaftrio in October 2020. Within an hour, I started coughing up phlegm and within a couple of days, I’d stopped coughing and my chest felt clear.

Kaftrio has given me a new lease on life and a different perspective on how to approach everything I do. Knowing that my health has stopped its decline, and now I can achieve anything – it's a really powerful feeling.

Michael Winehouse, 35, London

We’re extremely thankful to the researchers, campaigners, clinicians, supporters and, of course, the CF community for their hard work in bringing Kaftrio to the UK. The tireless work of so many has been instrumental in bringing this life-changing medicine to those who need it most. If you had a part to play in our life-saving drugs campaign, no matter how big or small: thank you.

As we move forward in a changing world of cystic fibrosis, we want to reassure the CF community that ensuring no one is left behind as CF care and treatment develop will continue to be a key focus for the Cystic Fibrosis Trust. 

Please talk to us if you are struggling with any emotions around the subject of Kaftrio – we are here to help. Call our Helpline for support with any aspect of cystic fibrosis, a listening ear, or just to talk things through. Our friendly team are here if you need us.

Donate today to help us fund vital research so that everyone with cystic fibrosis can live a life unlimited.

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Kaftrio is a medicine used to treat those aged 12 and over who have cystic fibrosis.

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