Campaigner welcomes deal on cystic fibrosis drugs

LOCAL cystic fibrosis (CF) campaigner, Liam McHugh has welcomed a new deal which will ensure that vital CF drugs are made available to NHS patients in the North.

Mr McHugh, whose daughter Rachel was diagnosed with CF in 1992, has long campaigned for better access to drugs and has also raised thousands of pounds for the Cystic Fibrosis Trust.

He said that Tuesday’s deal with pharmaceutical company Vertex, which manufactures the CF drugs, will bring relief to many sufferers.

“This is great news and will ease the minds of people who’ve had their lives improved by access to these drugs,” said the Castlederg man, who is also an ambassador for the Cystic Fibrosis Trust.

“I am so glad that young children will gain access to these vital medications that can mean that people with the condition can go on to live relatively normal lives.”

Mr McHugh added, “There is still no way to medicate ten per-cent of all people with the condition so the battle for treatments still continues.

“The vital work fundraisers and researchers are doing must continue until everyone with cystic fibrosis can be treated.”

DRUGS

Kaftrio, Symkevi and Orkambi are modular drugs that work to treat the root cause of CF by bypassing the genetic errors responsible for the disease.

In December, the National Institute for Health and Care Excellence (NICE) published draft guidance deeming the drugs too expensive for use by the NHS.

However, on Tuesday, Vertex, which manufactures the medication, confirmed it would be made available to NHS patients in the North.

Health Minister Mike Nesbitt also welcomed the news stating, “The newly published final draft NICE guidance will underpin continued access to these life-changing treatments for new and existing patients in Northern Ireland, where treatment is considered clinically appropriate by their treating clinician. I can also confirm agreement has been reached with Vertex, the manufacturer of the drugs, on the terms of their availability in Northern Ireland.

“This mirrors agreement reached in England.”