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Protest over limited access to cystic fibrosis 'wonderdrug'

Liam McHugh with his daughter Rachel who was told she wouldn't reach adulthood after being born with cystic fibrosis. Picture by Ulster Herald
Liam McHugh with his daughter Rachel who was told she wouldn't reach adulthood after being born with cystic fibrosis. Picture by Ulster Herald Liam McHugh with his daughter Rachel who was told she wouldn't reach adulthood after being born with cystic fibrosis. Picture by Ulster Herald

A CO TYRONE man who was told his 25-year-old daughter would never reach adulthood after she was born with cystic fibrosis will today take part in a protest to demand access to a 'wonderdrug'.

Liam McHugh from Castlederg will join with other families and patients at Stormont to campaign for the introduction of the drug Orkambi, which which has been shown in clinical trials to improve lung function and respiratory symptoms in people with the genetic condition.

Mr McHugh's daughter Rachel was given the treatment as part of a clinical trial.

He said: "My daughter is one of the few people in the UK lucky enough to get Orkambi. For Rachel it has been nothing short of a wonder drug.

"When Rachel was born we were told she wouldn't make it to adulthood. She is now 25 and, because of Orkambi, her lungs are better than ever. Looking at the strong and determined medical student she has become today, I'm the proudest father on the planet.

"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."

Ireland currently has one of the highest rates of cystic fibrosis (CF) in the world, with 500 patients – 300 adults and 200 children - currently living with the life-threatening condition in Northern Ireland.

Children diagnosed with the disease, which attacks the lungs, previously had a low life expectancy - with infants born in the 1950s only reaching the the age of five or six.

Last year the National Institute for Health and Care Excellence (Nice), which helps decide which new treatments should be available on the NHS, rejected Orkambi.

The Cystic Fibrosis Trust said that since Nice undertook its appraisal, new data had been published that suggested Orkambi almost halved the rate of decline in lung function in people with the disease.

It said that studies have shown that if children with cystic fibrosis start taking Orkambi early enough they could have a near-normal life expectancy.

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

The drug has been licensed in the UK for more than two years but it is still not available on the NHS as government and Orkambi's manufacturer, Vertex, have not been able to agree on a price.

Protests are also to be staged today outside Downing Street, the Scottish Parliament and theWelsh Assembly.

The CF Trust said that of the 10,800 people in the UK with cystic fibrosis, 3,296 could benefit from the drug.