A Co Tyrone campaigner for people with Cystic Fibrosis says he and his family are overjoyed with news that new drugs have received full approval.
Liam McHugh from Castlederg has raised more than £300,000 in fundraising efforts. His daughter Rachel was diagnosed with the disease at birth.
After a long battle to have life saving drugs Kaftrio, Orkambi and Symkevi made available in the north, they were granted initial approval four years ago.
However, newborn babies were unable to be treated with the drugs since that time, putting young children at risk of lung damage caused by the condition.
Mr McHugh was first inspired to campaign for greater availability of the drugs as his daughter Rachel struggled to gain access to treatment. After being placed on a successful trial for one of the drugs he has continued to campaign for better access.
“We knew after we got the drugs approved four years ago that there would be a review, which took place six or seven months ago,” he told The Irish News.
“NICE had said that the drugs were too expensive, so what that actually meant was everybody that was on the drugs stayed on them, but newborn babies that were born with Cystic Fibrosis weren’t going to get them.
“I had contacted the Department of Health to say that England had approved this last week and to find out what we were doing here.
“It means now that any newborn babies with Cystic Fibrosis, six months ago they weren’t able to get these life saving drugs but now they will like everyone else.
“The most important thing is that when they are eligible to receive them around two years of age, there won’t be any holding back on them and it will stop the development of lung damage for later years.
“It gives them such a good chance to life a full normal life.”
Health Minister Mike Nesbitt welcomed the publication of the NICE guidance. Under Department of Health policy, Northern Ireland follows NICE guidance on drug availability.
Mr Nesbitt said: “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.”