Belfast Telegraph

Protest at Stormont for new cystic fibrosis drug

By Staff Reporter

A Northern Ireland dad is calling for the wonder drug that transformed his daughter's life to be made available on the NHS.

Castlederg man Liam McHugh (55), will be speaking at a Stormont demonstration today, pressing for the availability of orkambi, a cystic fibrosis treatment hailed as a "major step forward" for people with the condition.

Cystic fibrosis is a life-shortening genetic condition that can cause fatal lung damage.

Only around half of people with cystic fibrosis live to celebrate their 40th birthday.

Speaking last night, Mr McHugh explained how orkambi had changed his daughter's life for the better.

"When Rachel was born we were told she wouldn't make it to adulthood," he said.

"She is now 25 and, because of orkambi, her lungs are better than ever."

Today, Rachel is a post-graduate at the Ulster University, studying for her PhD.

"She has a degree in psychology, a masters degree, and has a year to go in her studies for a doctorate."

Orkambi made it all possible, Mr McHugh added.

His daughter's lung function has improved by 19% since she took part in the three-year clinical trial of the drug, which is owned by Boston pharmaceutical firm Vertex.

"In cystic fibrosis terms, that's almost unbelievable," he said.

"I wish everyone dealing with this devastating disease could have the same chance of life as my daughter has been given, which is why I'm protesting to make orkambi available to everyone that needs it."

Mr McHugh, who has raised more than £150,000 for cystic fibrosis over the past 25 years, said: "The main thing for me is that we need this drug now. We don't have time to wait. I know of several people that have died because they could not get access to orkambi."

Protests are being held today outside Stormont, Downing Street, the Scottish Parliament and the Welsh Assembly against the lack of availability of the medication.

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