Belfast Telegraph

Cystic fibrosis protesters take message to Stormont

By Christine Carrigan

Protesters gathered at Stormont yesterday to call for a life-changing cystic fibrosis drug to be made available on the NHS.

Last year half of all people that died from the condition were aged under 30.

However, studies suggest that if children start taking drug orkambi early enough, they could have a near-normal life expectancy.

Orkambi is currently one of the only treatments which tackles the underlying cause of cystic fibrosis, and has been proven to slow down lung deterioration in more than 40% of sufferers.

The drug, developed by American company Vertex, has been licensed in the UK for two years. However, due to a pricing spat between the Government and Vertex, it remains widely unavailable to cystic fibrosis patients in the UK.

Protest organiser Liam McHugh from Castlederg, whose daughter Rachel (25) was selected for an orkambi trial run when she was younger, said: "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."

Ayrian Armstrong from Omagh was at yesterday's protest on behalf of her 10-year-old daughter Zona.

Aryian said her daughter is "very athletic and determined".

She said: "Zona gets three physio sessions a day along with taking 25 pills. We are hoping that orkambi is made available before it's too late."

Sinn Fein MLA Declan McAleer said: "It is very important that the Department of Health works to make this drug readily available."

Belfast Telegraph


From Belfast Telegraph