30/10/2019

Cystic Fibrosis Drugs To Be Made Available In NI

Life-saving drugs for the treatment of cystic fibrosis are to be made available in Northern Ireland.

The Department of Health confirmed its intention to strike a deal for the supply of Orkambi and Symkevi to eligible local patients.

The move follows a similar agreement in Scotland last month and with NHS England just last Thursday, 24 October.

Currently around 426 people are living with cystic fibrosis in Northern Ireland, 187 of which could stand to benefit from the new medication.

DoH Permanent Secretary Richard Pengelly said provision will be urgently commissioned once localised agreement on the deal is formally signed off.

"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," the health chief commented.

Orkambi has been shown in clinical trials to improve lung function and respiratory symptoms in people with cystic fibrosis, prompting local politicians and health advocates to call for provision in Northern Ireland.
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David Ramsden, Chief Executive at the Cystic Fibrosis Trust welcomed the development, saying: "It is fantastic news that Northern Ireland plans to give access to the life-saving CF drugs Orkambi and Symkevi. This has been a hard-fought battle, and a huge thank you must go to everyone who has been part of this campaign for their persistence and determination to keep fighting."

Mr Ramsden said the fight will continue to bring Wales in line and ensure all four regions gain access to the medication.

Introduction of the long-awaited drug for has been welcomed within the political community.

Alliance representative Jackie Coade said the move will be life changing for cystic fibrosis sufferers.

"This drug may not be suitable for everyone with cystic fibrosis, but will offer a lifeline to many," Ms Coade said.

"Across Northern Ireland many families will be delighted with this great news and I would thank the officials in the Department of Health for making this happen.

"While Orkambi will be available in Northern Ireland, England and Scotland, the fight for these precious drugs is not over until the Welsh government give access to CF patients in Wales, so until then, the campaign continues."

Sinn Féin MP Órfhlaith Begley also commended all those who campaigned for access to Orkambi, saying: "This drug is available elsewhere on these islands and has significantly improved the lives of people with cystic fibrosis.

"This is good news for all of those living with cystic fibrosis as now they will have equal access to this drug."



(JG/CM)

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