Sharon Keogan (Independent) | Oireachtas source

I welcome the Minister of State to the Chamber. I am disappointed not to see the Minister, Deputy Stephen Donnelly, this afternoon. At this stage, no one needs the background to this debacle which has been ongoing since the start of the year and has been raised multiple times in both Houses. I spoke on it on the Order of Business in June and 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 4 July.The two parties met again on Friday, 16 September, and a spokesperson for Vertex informed me that the HSE has made no explicit movement away from its 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 the red tape not to be wrapped around Kaftrio because this is guaranteed to lead to decisions being postponed and access delayed to this life-saving and life-changing drug therapy. Why is the HSE's corporate pharmaceutical unit, 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 mutation found in these 35 children - undergo a full HTA prior to reaching a pricing agreement? Vertex maintains that it has put forward several solutions that would allow rapid access for the 35 children. 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.

All of this is from Vertex's side, but only because we have heard so little from the HSE, which is not unusual. We have heard so little from it that I had to submit a freedom of information request to try to see what was being said. I was told it would cost at least €700 to fill it. I am still trying to see what information we can get, if any.

Would the Minister of State care to update the House but, most importantly, the families of the 35 children, as to what progress the HSE is seeking to make in its negotiations with Vertex, beyond "Do what we say". To my knowledge, to date neither the Minister nor the representatives of the HSE's CPU, have met with Cystic Fibrosis Ireland, which is leading the campaign to secure this medication. Vertex, however, met with it at the European cystic fibrosis conference in Rotterdam on 10 June. From where we stand, the efforts to resolve this pricing dispute seem very one sided. Perhaps there is something in the Minister of State's speech that can set the record straight. I look forward to hearing from him what the Minister for Health has got to say.