Couple fear drugs ruling could be death sentence for their daughter

By Barrie Hudson - 20 November 2023

  • Olive, Alice and Justin

    Olive, Alice and Justin

A Wiltshire couple whose daughter has cystic fibrosis are campaigning for her to be allowed drugs which will prolong her life.

Alice and Justin Douglass, from Ashton Keynes, believe three-and-a-half-year-old Olive will have a normal life expectancy if she’s prescribed pioneering new treatments.

However, their hopes for this have been dashed by a recommendation from the National Institute for Health and Care Excellence (NICE) that these modulator therapies are too expensive.

Alice, 42, an independent financial adviser, and Justin, 52, an electrician, say the news is a blow to the family.

“Life with cystic fibrosis is challenging not only for our daughter but also for us as parents and for the wider family," said Alice.

"Our daughter has been on a number of medications since she was three weeks old.

“We had no idea either of us were carriers, so her diagnosis came as a complete shock. Understandably, our worlds crumbled when we found out. However, our cystic fibrosis team were so positive about the improvements in treatments for those with CF and the new modular therapies, we too have been positive about the future outlook for Olive. 

"We believe she could live a normal life with a normal life expectancy if she is able to have access to these wonder drugs and specifically Kaftrio.”

The couple have written to NICE asking it to rethink its recommendation, which is now being considered during a short consultation period.

The couple have just welcomed the arrival of a second daughter, Tallulah, born at the beginning of November, who does not have cystic fibrosis. This news was a huge relief to Justin and Alice, but their fears for Olive continue.

Alice said: “Despite all the challenges, Olive is such a happy little girl. She is a joy to be around. She is always smiling despite all she has had to endure. We were expecting her to be going onto Kaftrio by the end of this year. 

"Now it seems like, if the funding is withdrawn, she will not be going onto it at all. The positivity we had has sadly gone and now we feel that she has been handed a death sentence.

“We are feeling absolute despair that she may die before us. Absolute despair that her health may deteriorate before our eyes. She is full of life and promise. She potentially has her whole future ahead of her but sadly it feels like this is being snatched away. 

"Since the news, we and our wider family have been feeling anxious, upset and stressed.”


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