Co Down mum’s relief as life-extending cystic fibrosis drug Orkambi to be introduced in NI
CHILDREN in Northern Ireland suffering from cystic fibrosis will get access to the life-extending drug Orkambi, the Department of Health has announced.
Last week we reported on a plea from the mother of twoyear-old Co Down boy Lorcan Banks, who called on the department’s permanent secretary Richard Pengelly to make the drug available here.
Jen Banks was speaking after NHS England agreed a price deal with Vertex Pharmaceuticals, which makes Orkambi. The drug is already available in Scotland and in the Republic.
Mr Pengelly invited Mrs Banks and fellow campaigner Liam McHugh to Stormont yesterday where he briefed them on the situation. Speaking after the meeting, Mrs Banks said that while she is relieved her son will now receive 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.
“This is a great day for us but I am mindful 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.”
Mr 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 families.
He added: “It is no secret that the health budget in Northern Ireland is under severe pressure, with many competing demands being made for funding. 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.”