Ulster Unionist MLA Robbie Butler has welcomed the landmark deal between NHS England and drug manufacturer Vertex Pharmaceuticals that now grants cystic fibrosis patients in England full access to three major drugs, including Orkambi.
Robbie Butler said:
“This is a hugely significant development and one which I suspect will have brought many of the campaigners across the UK to tears. For far too long now it has been totally unacceptable that people with cystic fibrosis were suffering, and in some cases coming to serious harm, when incredibly effective drugs were known to exist.
“Drugs such as Orkambi and Symkevi have been found to have life-changing benefits for patients in other countries. Not only do they greatly improve quality of life but they have been found to also significantly reduce hospitalisations, which now the health service across England will soon benefit from.
“Whilst I am delighted for patients in England, my thoughts are now with local families here in Northern Ireland who still have no access to these drugs.
“NHS England generously negotiated a deal with the drug company that included a legal requirement that the drugs could also be made available in Wales and Northern Ireland on the same terms. There is now a decision to be taken locally and as far as I am concerned there can only be one outcome. The drugs must be made available here as they have been in England.
“The ongoing absence of a local Executive however is likely to shamefully delay a decision being taken. Today I have written not only to the Department of Health locally, but also to the Secretary of State urging them to allow local patients to benefit from the drugs. If my colleague Lord Empey’s Bill to transfer health functions back to Westminster is successful, I believe this is exactly the sort of issue Northern Ireland would greatly benefit from by having Ministerial leadership.”