Cystic fibrosis drug: ‘I feel I’ve been given a second chance at life’ – BBC News

BBC Newshour Report: 8 August 2021


By Ben Philip
BBC Scotland   Published 5 August 2021

A 25-year-old Aberdeenshire woman has said she is now living rather than just existing, one year after getting a delayed cystic fibrosis drug.

Hailey Mann, from Westhill, had been advised to make end-of-life preparations as her condition worsened.

She said there were “tears of joy” when the drug was approved for her to start using last year.

The beauty therapist said her life had been transformed and she was now living it to the full.

Ms Mann said at the time that an agreement had been made with the pharmaceutical company which manufactures Kaftrio to make the medicine available to her on compassionate grounds.

The licensing of the drug in Scotland had been delayed by the Covid-19 pandemic, but was then approved for use.

She told BBC Scotland: “It’s been a rollercoaster year, but a much better one than I was on before. It’s a complete 360.

“The amount of energy, the amount of things I’m doing – before Kaftrio I was just existing as opposed to living. Now I’m living. It’s a totally different life.

“I feel like I’ve been given a second chance at life.”

Ms Mann said she tries to do something every day to to make the most of things “because you don’t know what’s around the corner”.

She explained: “Even with the pandemic I’ve been able to do so much more in this last year. The difference is unreal.

“I’m back to work, working from home. I love my job. In between all that, trying to do things all the time. Even just little things like going to the park with my little sister. Something as little as that I would have never been able to do before.

“I’m climbing up and down the stairs which were like a mountain beforehand. I don’t require any oxygen anymore and just not having to depend on anybody. It’s a complete U-turn.”

She added: “I think last year when I was so ill, it just feels like a blur. I wasn’t myself. I’m usually full of energy and doing things and usually quite positive. Last year was hard. I’d almost lost sight of all that. I’m now back to my old self.”

She said she had stayed in touch with a transplant team and that they were happy with her progress, with her lung function going up and stabilising.

“So they’re just keeping me on their radar so if there was to ever be any issues, they know who I am and where I’m at, but for now I’m happy with where I am,” she said.

“Just to try and live everyday like it’s your last. I’m hoping to go to Mexico with the family. That’s our ultimate holiday destination.”

The European Medicines Agency (EMA) allows for use of “unauthorised medicine” that has not yet been licensed under “compassionate use programmes”.

Cystic fibrosis affects hundreds of people in Scotland.

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