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Cystic fibrosis sufferers’ joy as life-saving drug is rolled out across UK

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Among those clutching the precious pills was Jessica Cranfield, 19, who was on our first front-page story calling for the medicine to be made available on the NHS. She told us yesterday: “I am so excited. I cannot wait to see how it helps me in my new life at university and in the future.”

Her mum Sharon added: “Thank you all at the Daily Express who helped us tell our story. What better gift could I give my daughter than a longer, healthier life?”

Their joy comes 19 months after Jessica was in the Express with other children under the headline: “How Can A Row Over Money Deny Them A Longer Life?” We continued our campaign until NHS England sealed a deal with US firm Vertex for the drug – followed by Scotland, Wales and Northern Ireland.

Now hospitals are delivering the first boxes to patients, many of whom have been in our paper.

They include Annabelle Brown, 21, of Guildford, Surrey, who is studying for a Masters degree in biochemistry. Her lifelong dream has been to find a cure for CF.

Kaftrio helps 90 percent of sufferers.

Annabelle said: “My doctors told my parents a breakthrough like Kaftrio may come in my lifetime but it seemed impossible.

“Getting this amazing medication has only made me even more determined to finish my degree and start working on research for a cure for CF.”

Tim Wotton, 49, of Wimbledon, said: “After nearly 50 years of daily suffering I’m overwhelmed that three tablets a day can make such a huge difference.

“I’m already coughing a lot less and this brings hope for a longer and healthier life with my wife and son.”

Poorly Zoe Cook, 29, of Surrey, hopes Kaftrio will take her off the transplant list. Her lung function is currently just 28 percent.

She told us: “It makes me emotional to think I could actually get married without having to be in a wheelchair or wear oxygen.”

Actor Oli Dillon, 22, of Sevenoaks, Kent, said of receiving the pills: “It hasn’t quite sunk in yet and I don’t think it will for some time.

“The support from the Daily Express has been truly breathtaking. This wouldn’t have been possible without the help of all the tireless campaigners, including my mum Alison.”

One of the first people to get Kaftrio was new dad Dean Puckering, 32, of Salford, Greater Manchester.

He has seem his lung function improve by 10 percent in the last five days.

Dean, whose first child Adalyn was born in July, said: “I now know I will have a longer life with my new daughter, to see her grow up and flourish.”

He added: “In just days, my chest and sinuses are completely clear for the first time in 20 years and my energy levels and appetite are through the roof.”

Alana Lyward, 39, of Godstone, Surrey, is also looking forward to seeing her sons, aged one and two, grow up.

She told us: “My beautiful boys were carried by my wonderful friend, a surrogate mum, so that I could preserve my lungs for as long as possible.

“My heart is full of hope for the future. Now I can dream of seeing them grow older.”

There are around 10,500 people in the UK with cystic fibrosis – a life-limiting genetic condition that destroys the lungs with sticky mucus and affects other vital organs. Only half of patients reach the age of 32.

The CF Medical Association, which represents doctors in the UK who deliver clinical care to people with cystic fibrosis, has described Kaftrio as “truly life-transforming”.

However, it can only be taken by people who are aged 12 and over, with Vertex’s drug Orkambi the only option for young children.

Before Kaftrio was approved for use on the NHS, the Daily Express fought for it to be made available on compassionate grounds.

Among those to have benefited is Nicole Adams, 29, who was dying in ICU in a Belfast Hospital last Christmas. Now she is out running every day, has put on 2st and has a successful clothing business.

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Comment by Carlie Pleasant

Mother of one, Carlie, 30, from Sittingbourne, Kent, describes the bittersweet moment when – after waiting for the arrival of Kaftrio – she realised a lung infection would prevent her from receiving the treatment.

Happiness, excitement and hope are what we feel with Kaftrio beginning to be delivered.

But sadly, this moment I dreamed of has taken a cruel turn for me.

I had played the scene of receiving Kaftrio in my head countless times since Matt Hancock rang me in June, revealing an NHS deal for the drug was done. But since then, due to a lung infection seriously impacting my quality of life, I have needed an urgent steroid treatment regime.

This means Kaftrio is not available for me right now, dealing my family a bitter blow. I’ve been feeling poorly for a while and hoped Kaftrio would help me out of this dark hole. Just as I wanted to join in celebrating with fellow sufferers and campaigners, I am now watching from the sidelines.

I am delighted for those starting to receive their drugs this week.

But since joining the fight for life-saving drugs in 2017 it is now bittersweet that I, like many others, have to prioritise other urgent treatments instead.

I know I will soon be taking Kaftrio, but until then I will wait, work hard on my physio and weight and prepare for my own incredible journey.

Carlie Pleasant is a Daily Express writer and CF sufferer

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