Open Letter to Vertex Pharmaceuticals from CFI
29th November 2016
President, and Vice President
Regional General Manager
Vertex Pharmaceuticals (Europe) Ltd
On behalf of Cystic Fibrosis Ireland (CFI) we would strongly urge, even at this late hour, that further negotiations are undertaken between Vertex Pharmaceuticals and the HSE to find a fair price for the reimbursement of Orkambi for people with CF in Ireland.
We would urge you to reduce/further reduce the price of Orkambi and if possible enter into a ‘shared risk’ agreement to enable this important drug to be made available in Ireland – if these are the sticking points in the negotiations.
Through a failure to communicate from the HSE, we have not been privy to the reasons why negotiations have been seemingly concluded/suspended except from snippets gleaned from the media in relation to concerns about the price and efficacy of Orkambi. We would hope the negotiations will continue.
We have written to the Minister for Health, Simon Harris TD to seek a meeting to discuss these issues and to be reassured that as he has stated this is not the end of the process. We would equally urge Vertex to seek further compromises from which a fair decision on price can be reached and we would also urge a meeting with you on the same to convey these concerns.