Belfast Telegraph

Dad in crusade for cystic fibrosis 'wonder drug' that changed his girl's life to be more widely available in Northern Ireland

By Cate McCurry

A father who has dedicated his life to fundraising for cystic fibrosis research since his daughter was born with the disease is campaigning to have a "miracle" drug made widely available to sufferers in Northern Ireland.

Liam McHugh, who has raised more than £132,000 by running 15 marathons, said Orkambi had dramatically changed Rachel's life after she started taking it as part of a trial three years ago.

The Castlederg dad is among thousands battling to have it prescribed on the NHS.

Rachel (24) said she would not have been able to graduate from university without the drug, as it had given her the energy to complete her studies.

The student takes 50-plus tablets daily and follows a regime of intense physiotherapy.

While Orkambi is a licensed drug, medicines watchdog NICE (National Institute for Health and Care Excellence) said it was not cost-effective and advised the NHS against buying it.

It costs more than £100,000 per patient annually.

Liam has called on Health Minister Michelle O'Neill to make it more widely available in Northern Ireland and help transform the lives of CF patients.

"To me, Orkambi is a wonder drug, the change in Rachel has been amazing," he said.

"Her lung functions have risen by 19% and she's gained over a stone in weight.

"We have been waiting for so long for her to put on weight and be hungry and full of energy."

Rachel, who is doing a PhD in psychology at Magee, said: "If it wasn't for Orkambi I wouldn't be able to do my PhD.

"It gives me the energy and drive to keep up with the very heavy workload that a PhD entails.

"I just couldn't have coped."

CF is a life-shortening genetic condition that causes the lungs to become clogged with mucus, making it hard to breathe.

There are more than 10,500 people with CF in the UK.

Half of those who die from the condition are aged 28 or younger.

"It's such a cruel illness and hidden illness, people don't realise the work it entails having CF," Liam added.

"But now there's a drug out there that can change their lives for the better, and for us to be told it's too expensive is so unfair.

"There are people who are dying from CF, and they would have a good chance of having a better and prolonged life with this drug.

"People are out there dying from CF and they are crying out for this drug, and they can't get it because of money.

"What price do you put on life?

"It's all about money. People ask me why are you pushing so hard, as Rachel is already on it, but I dedicate my life to CF fundraising, and I can see the benefits of it.

"I want the rest of my CF family to have what we know is out there."

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