Cystic fibrosis latest: New wonder drug Kaftrio gives hope to sufferers

5 min

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Cystic fibrosis latest: New wonder drug Kaftrio gives hope to sufferers

Daily Express’s cystic fibrosis campaign (Image: Daily Express)

For 18 months the Daily Express has crusaded for Kaftrio – hailed as “almost a cure” for the genetic condition – to be available on the NHS. In June, NHS England finally sealed a deal with US firm Vertex for the wonder pill, followed swiftly by the rest of the UK. There are more than 80,000 sufferers in the world – 30,000 in the US and about 10,500 in the UK – but previously only about half of those lived into their 40s.

Now Vertex’s Kaftrio drug is set to shift the landscape for the 90 percent who genetically can take the pill – with many seeing results within just a few hours.

We spoke to nine sufferers about what taking the life-changing medication means to them…

Rebecca Turner

Nursery assistant Rebecca Turner hopes her amazing new Kaftrio pills will one day enable her to raise a young child of her own.

Rebecca, 25, is currently fostering a baby as she was unsure whether her CF would let her physically have her own child.

But after just a week on the pills Rebecca, of Torquay, Devon, has already noticed a huge positive change in her body.

Now she and fiancé Matt Streeter, 29, are starting to let themselves dream that one day they could be raising their own baby. She said: “I love fostering as it is something Matt and I have always wanted to do.

“But we also dream in the future of maybe having our own child or adopting. Before I could be scared to dream that – now it feels it could happen.

“I’ve seen some incredible differences.

“I used to have coughing fits in the night – they have gone. It’s unbelievable.”

Cystic fibrosis latest: New wonder drug Kaftrio gives hope to sufferers

Bianca Nicholas (Image: Adam Gerrard)

Bianca Nicholas

Eurovision star Bianca Nicholas is singing again and planning for a baby after taking the drug.

Bianca, 31, represented the UK in 2015 in the pop duo Electric Velvet, and also starred on The Voice and The X Factor despite her CF.

Her singing and dancing kept the ravages of her genetic lung condition at bay until the last few years when it forced her to stop.

But after taking Kaftrio for just one week Bianca, of Tonbridge, Kent, has taken her first deep breath since she was 15.

Now the part-time charity fundraiser can even dream about one day adding a child to her family of husband Gearoid, 32, and pet dog Yogi.

She told us: “I was worried about the strain having a baby would put on my body and whether I could give my baby enough attention. Kaftrio has taken that guilt away.”

Shona Young

Shona Young was one of the first in Scotland to get Kaftrio – and has seen a dramatic impact in just a few weeks.

The 25-year-old was diagnosed with CF aged three, just days after her eight-year-old sister Kirsty was also found to have the genetic lung condition.

She said: “I started taking the pill on September 17 and within a few hours I was coughing up stuff that had been deep in my lungs.

“The change I have already felt is dramatic. I have an intense hunger and almost too much energy.

“Normally every morning when I woke up my lungs felt sore. But now they don’t and I can also take a big deep breath.”

Shona, of Kilsyth, Glasgow, is now planning for the future, which includes enrolling on a dietitian course.

Jack Byrne

A Britain’s Got Talent star is ecstatic to finally get his cystic fibrosis wonder pill – as it will add years to his showbiz career.

Jack Byrne, 25, found fame as one of the dancing stormtroopers who wowed Simon Cowell on Britain’s Got Talent in 2016.

The Liverpool-based Boogie Storm group won Simon’s “Golden Buzzer” that year – then later amazed US audiences on America’s Got Talent.

Jack always feared one day his CF would stop him travelling the world, doing the dancing and choreography that he loves.

Now his future looks brighter after he delivery of Kaftrio this week.

Jack, of Thingwall, Merseyside, told us: “I have always said I have never had to think about the future because I never thought I would reach it. Now I can.”

Cystic fibrosis latest: New wonder drug Kaftrio gives hope to sufferers

Cystic Fibrosis sufferer Isabelle Finn meeting Prime Minister Boris Johnson (Image: Tim Clarke/DailyExpress)

Zach Machin

Zach is suffering heartbreaking guilt at taking Kaftrio – after losing 10 close friends to the cruel condition.

The 24-year-old first appeared in the Daily Express last October, explaining how the genetic disease had claimed his childhood pals’ lives.

But in just a month on the drug he has seen his lung function rise from 42 per cent to 64 per cent.

Zach, from Pinxton, Notts, said: “When I started taking Kaftrio I was naturally excited but struggled emotionally.

“I recently lost a good friend to CF and if Kaftrio had come earlier for him he could still be here.

“I was getting worse rapidly but it has come at just the right time and given me another chance in life.

“I am grateful but it’s tinged with sadness too.”

Isabelle Bibb

A teenager who educated Boris Johnson about her CF hell has sent us a picture of joy…holding her life-saving wonder drug.

When told we had won Orkambi, suitable for younger patients, last October, Isabelle Bibb’s tearful reaction went viral and was “liked” by more than 12,000 Twitter viewers.

Days later, the Prime Minister invited her to 10 Downing Street where she revealed CF sufferers’ daily struggle with the disease.

Mother Beth from Chilcote, Leics, told us: “It was a wonderful, crazy day. The Prime Minister was really attentive to Isabelle and left speechless by her bravery.”

Now Isabelle, 14, no longer coughs in her sleep and is looking forward to laughing without struggling for breath.

She said: “I’m so excited and feel so lucky to be given this amazing lifeline.”

Matilda Herbert

When the box of medication arrived, Matilda Herbert and her parents broke down in tears.

But the 22-year-old hotel receptionist admits she was scared to pop the first pill – In case it did not work.

She said: “I’m not very good at talking about my feelings or fears and they had built inside up to that moment.

“I think when the drugs arrived it released a lot of emotions about my life and future.We were all in tears.”

Matilida, from Shrewsbury, Shrops, added: “Secretly, I was terrified to take it because I knew it is the very latest thing out there – so if it didn’t work for me there was nothing else.

“That’s very scary but I’ve already started and am feeling a positive effect which is such a relief and so exciting.”

Laura Visick

Laura saw her wedding cancelled by the pandemic – but will be a healthier bride when she finally gets to walk down the aisle next year.

The 30-year-old received her new medication just a week after COVID-19 put paid to her big day with fiancé Charlie.

She said: “Cancelling the wedding was heartbreaking but getting Kaftrio has given me a real boost.

“It’s been so emotional for everyone. Such a journey for all of us. Each milestone in the campaign has been hopeful and amazing.”

After just a week the tablets have already boosted Laura’s lung function by 10 per cent, eliminated her cough and given her extra energy.

Laura from Ealing, west London, added: “I feel like I can properly fight it now and think of a future where I control it and it doesn’t control me.”

Zona Armstrong

A tearful mother told how she can finally “breathe” for the first time in 14 years after her daughter started taking Kaftrio.

Ayrin Armstrong, 32, gasped when her first baby was diagnosed with CF 14 years ago and has felt she has not breathed out properly ever since.

For many years daughter Zona has battled a nasty bug, nontuberculous mycobacteria (NTM), making her lung function plunge.

Last Friday the 14-year-old, of Omagh, became just the third person in Northern Ireland to secure wonder drug Kaftrio.

Mother-of-three Ayrin said: “When we arrived at the hospital the doctors came down playing the Kool and The Gang song Celebration and dancing.

“She said to me ‘Mum, this means I can do things.'”

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