WATCH: Families desperate for hope as report says life-saving CF drug ‘too expensive’ to fund

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The cystic fibrosis community was shocked to find out about the recent National Institute for Health and Care Excellence (NICE) draft report.

The National Institute for Health and Care Excellence (NICE) has issued preliminary guidance this month, stating that three drugs used to treat cystic fibrosis (CF) should not be used within the NHS.

Kaftrio, Orkambi, and Symkevi are the three drugs in question, produced by Vertex Pharmaceuticals. Jess and Will Meyrick have a 2-year-old daughter called Ottilie with the condition.

Jess Meyrick said: “When Ottilie was born, there was a whole new language we had to learn: medication, physical therapy, hospital appointments. It’s a very debilitating condition.”

The Meyrick family. You can follow them @thelittledreameruk on Instagram.The Meyrick family. You can follow them @thelittledreameruk on Instagram.
The Meyrick family. You can follow them @thelittledreameruk on Instagram.

Speaking about the importance of these drugs, Jess Meyrick said: “It’s a life, it’s a lifeline.”

Will Meyrick added: “The drugs are life-changing. We’re not talking about a couple of years of extra life, we’re talking about doubling their life expectancy.

"We’re talking about them not having to visit the hospital anywhere near as much as before when they’ve had Kaftrio for example.

“Fewer hospital visits for one or two weeks at a time because of Kaftrio has improved the quality of life for people.

"There’s a lot of people born with CF. If the funding ends up being withdrawn there will be more and more people that won’t have access to these medications every single year.”

On Wednesday, November 15 cystic fibrosis drugs Kaftrio and Kalydeco were licensed for patients aged two to five years old. However, the family said this was a ‘bittersweet victory’.

The Meyrick family said: “There’s still concern about funding being pulled for anyone under 2 years not on a modulator drug.”