Senator Sharon Keogan - Kaftrio for Children with Cystic Fibrosis

https://youtu.be/BxxTrZWsvTU

Really, at this stage no-one needs the background to this — this debacle has been on-going since the start of the year, and has been raised multiple times in both houses. I spoke on it at Order of Business back in June, and then again in September, when we realised that the HSE’s Corporate Pharmaceutical Unit had held no meetings with Vertex Pharmaceuticals over the summer recess, with the last meeting held on July 4th. The two parties did again meet on Friday the 16th of September, and a spokesperson for Vertex has informed me that the HSE has made no explicit movement away from their current position that Vertex will need to submit a full Health Technology Assessment (HTA) dossier to the National Centre for Pharmacoeconomics for this patient population. Campaigners for these children have repeatedly called for this red tape not to be wrapped around Kaftrio, as this is guaranteed to lead to decisions being postponed, and access delayed to this life-saving and life-changing drug therapy. Minister, why is the HSE’s CPU insisting that Kaftrio, which is already being administered to children and adults alike in Ireland, and to children in other countries with the specific gene mutations found in these 35 children, undergo a full HTA prior to reaching a pricing agreement? Vertex maintains that they have put forward several solutions that would allow rapid access for these 35 children, and that the HSE remains set on the submission of a HTA, while Vertex “remains committed to finding a quick solution for access for the 35 children currently impacted”. Now, all of this is from Vertex’s side of things of course — but only because we’ve heard so little from the HSE, not unusually. We’ve heard so little from them that I had to submit a Freedom of Information request to try and see what was being said — they told me that it would cost at least €700 to fulfil it. I’m still trying to see what information we can get, if any. So, Minister, would you care to update the house — but more importantly, the families of those 35 children — as to what progress the HSE is seeking to make in their negotiations with Vertex, beyond “Do what we say”? To my knowledge to date, neither the Minister nor representatives of the HSE’s CPU have met with Cystic Fibrosis Ireland, who are leading the campaign to secure this medication — Vertex, however, met with them at the European CF Conference in Rotterdam on Friday 10 June. From where we’re standing Minister, the efforts to resolve this pricing dispute seem very one-sided — perhaps there’s something in your speech today which can set the record straight; if so, I look forward to hearing it.