Belfast Telegraph

Cystic fibrosis drug to be made available in Northern Ireland

Jen Banks and her son Lorcan who lives with the condition.
Jen Banks and her son Lorcan who lives with the condition.
Donna Deeney

By Donna Deeney

Children in Northern Ireland suffering from cystic fibrosis will get access to the life enhancing drug Orkambi, the Department of Health has announced.

Last week the Belfast Telegraph reported on an impassioned plea from the mother of a two-year-old boy — Lorcan Banks who called on the Permanent Secretary, Richard Pengelly to make the drug available here.

Jen Banks made her call days after NHS England agreed a price deal with Vertex Pharmaceuticals who make Orkambi with a condition Northern Ireland and Wales were included.  The drug was already available in Scotland and in the Republic of Ireland.

Mr Pengelly invited Mrs Banks and fellow campaigner, Liam McHugh to Stormont today where he briefed them on the situation.

Speaking after the meeting, Mrs Banks said that while she is immensely relieved her son will now get the drug, she said no parent should have to fight for medicine.

She said: “I cannot begin to describe how ecstatic I am, not just for Lorcan but for all the children in Northern Ireland who will now get Orkambi.

“This has been a long battle — an absolute nightmare and not something any family should have to deal with while they are caring for a very sick child.

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“This is a great day for us but I am mindful too of all the families for whom this news comes too late. 

“It is not acceptable that drugs can be priced out of reach and people die as a result so there needs to be changes to the system to prevent this from happening.

“This is a day for celebrating and we will do that but there needs to be changes so no parents ever goes through this nightmare ever again.”

Department of Health Permanent Secretary Richard Pengelly said: “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.”

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

He added: “I want to place on record my thanks to colleagues in England for working closely with us and getting this agreement in place.

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

“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 benefited from well-established arrangements on drug price appraisal and negotiation.”

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