Cystic fibrosis patients set for 'pre- Christmas present'

Health Secretary says specialist treatments will be available soon

Author: Tara MclaughlinPublished 30th Oct 2019
Last updated 30th Oct 2019

A campaigner who has been waiting for four years for specialist cystic fibrosis treatments to be made available on the NHS in Northern Ireland, claims patients lives are set to be 'turned around.'

It comes as the Department of Health announced Orkambi and Symkevi will be introduced as treatments for eligible patients 'in the very near future.'

Health chiefs met with campaigners and families to brief them on the new plans.

Permanent Secretary Richard Pengelly said: "The Department is delighted to be able to confirm its plans.

"This has been a very difficult and sensitive process.

"For patients with Cystic Fibrosis and their families, it has been a long and frustrating road.

"In the NHS England agreement there is a commitment that Vertex must make the drugs available to Northern Ireland patients on equivalent terms.

"That removes any feasible impediment to a localised agreement with the company. "Discussions are being commenced with Vertex Pharmaceuticals and, subject to that localised agreement being formally signed off, we will be able to start commissioning the drugs as a matter of urgency."

Castlederg man Liam McHugh has been campaigning for the drugs to be made available on the health service here for years.

His daughter Rachel has cystic fibrosis and has been taking Orkambi as part of a clinical trial.

Giving his reaction to the announcement he said 'patients lives are going to be transformed.'

"It's definitely life-changing and it's definitely life-prolonging, without a shadow of a doubt.

"My daughter has been on Orkambi for six years due to clinical trials.

"Lung function is a big thing for people with cystic fibrosis and as well it's so hard to put on weight.

"Rachel's lung function is up by 19% with orkambi which is massive and she put on over a stone in weight."