Tears of joy as new drug ready for cystic fibrosis patient – BBC News

Last Updated on August 8, 2020 by

Hailey Mann

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Hailey Mann said she was called by her doctor to let her know the treatment would be available to her soon

A woman waiting for the approval of a delayed drug that could save her life says there have been “tears of joy” after hearing it is on its way to her.

Hailey Mann, who has cystic fibrosis, had pinned her remaining hopes on a new treatment reaching her in time.

The Scottish government approved Kaftrio on Tuesday, with licensing expected in the coming weeks.

However, the 24-year-old was called by her doctor on Friday to say the drugs would be with her soon.

“It’s been a long, hard fight so to get that phone call today was unreal – absolutely unreal. It still doesn’t feel real,” she told BBC Scotland’s The Nine programme.

“There’s been lots of tears of joy and it’s been a really emotional night.”

Ms Mann, from Aberdeenshire, said an agreement had been made with Vertex Pharmaceuticals to make the triple therapy treatment available to her on “compassionate grounds”.

“I’ve now just to wait for a phone call from the pharmacy to let me know the drugs are here, but I’m assured that they’re on their way,” Ms Mann said.

Doctors had earlier told her to make end-of-life preparations as her condition worsened.

She told the BBC: “I’m well aware of how cystic fibrosis works and that things do come to a point where I have to start making plans – but never did I think at 24 that was going to happen to me.”

The licensing of the drug in Scotland had been delayed by the Covid-19 pandemic.

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Hailey Mann and her mother Alison Gauld

On Tuesday, Health Secretary Jeane Freeman announced a deal had been agreed with Vertex Pharmaceuticals to make the treatment available through the NHS.

Following approval from the European Medicines Agency, it is expected a licence will be granted in the coming weeks.

Cystic fibrosis currently affects about 900 people in Scotland.

Ms Mann said the drug would make a “huge difference” to other people with cystic fibrosis – particularly those whose condition was not as advanced as hers.

She added: “Honestly I can’t even put it into words. I can’t describe how I feel. I think I’m still taking it all in.”

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