Lifesaving cystic fibrosis drugs to be made available on NHS in Northern Ireland

The Department of Health has confirmed its intention to make Cystic Fibrosis drugs Orkambi, Symkevi and Kalydeco available to eligible patients in Northern Ireland.

It comes as a great relief to many families.

Around 2,500 babies in NI are born with cystic fibrosis - with only half of those live to the age of 32.

The announcement follows the pricing agreement reached last week between NHS England and Vertex Pharmaceuticals, manufacturer of the drugs.

Department of Health 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.

Families have campaigned for Orkambi since 2015, but the drug was deemed too expensive for the NHS to fund at the time.

“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.”

Mr Pengelly thanked all those who had made representations to the Department on securing availability of the drugs. He paid tribute to the campaigning families who had made their case to him and colleagues.

He invited Orkambi campaigners Liam McHugh and Jen Banks to Stormont today to brief them on the situation.

13-year-old's plea for 'life-changing' cystic fibrosis drug Orkambi to be made available on the NHS

The Permanent Secretary praised Departmental officials for their work on the issue.

“I also want to place on record my thanks to colleagues in England for working closely with us and getting this agreement in place,” he said.

He added: “Departmental policy - established by Ministers – is to follow NICE decisions on the commissioning of new drugs. NICE is supporting the agreement announced last week.

“Commissioning Orkambi, Symkevi and Kalydeco this year and in future years will therefore be in line with existing policy.

“It is no secret that the health budget in Northern Ireland is under severe pressure, with many competing demands being made for funding. As I have made clear, we cannot do everything we are being asked to do.

“In this case, we have benefitted from well-established arrangements on drug price appraisal and negotiation. I believe these processes have ultimately served us well, with a sustainable agreement that is good news for patients and taxpayers.”