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Agreement needed over Orkambi drug - McAleer

30 June, 2017 - by Declan McAleer

Sinn Féin MLA Declan McAleer has called for agreement on a price to be reached between Vertex Pharmaceuticals and the British Government on Orkambi.

Speaking after he addressed a protest at Stormont on Monday, West Tyrone MLA Declan McAleer said:

“The island of Ireland has the highest proportion of people suffering from cystic fibrosis in the world. In the north of Ireland alone there are 455 people suffering with cystic fibrosis.

“Along with fellow MLAs, I have been working closely with the McHugh family, whose daughter Rachel has Cystic Fibrosis, to help advance the campaign for Orkambi to be made available here.

“This has included meeting with senior health officials and getting the campaign on the agenda of the health committee.

“During this time, I have witnessed the impact the drug has on the symptoms of Cystic Fibrosis.

“Rachel has been on Orkambi as part of a clinical trial for the past number of years. During a three-week gap in the provision of the drug, her condition rapidly regressed with a drop in her lung function of 20% in this short period. 

“Liam, Eleanor and the McHugh family deserve huge credit for leading the fight for Orkambi to become available on the NHS.

“While I welcome the fact that Orkambi has recently been made available to suitable Cystic Fibrosis patients in the south, like in other EU states, it is unfair that it still remains unavailable here in the north.

“It is disappointing the Minister for Health in Dublin ignored efforts from Sinn Féin Health Minister Michelle O'Neill to explore a collaborative approach in accessing Orkambi for all Cystic Fibrosis sufferers on the Island of Ireland.

“However, the onus is now on the makers of Orkambi, Vertex, and the British Government to reach agreement as soon as possible, before being considered by the relevant clinical authority, NICE, and made available through the NHS.” 

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