Oireachtas Joint and Select Committees

Wednesday, 22 June 2022

Joint Oireachtas Committee on Health

Rare Diseases: Discussion (Resumed)

Mr. Shaun Flanagan:

I was the lead in the negotiation in 2017 which led to the putting in place of the portfolio deal with Vertex. In 2017, the HSE entered those negotiations clearly in the position it wanted access to all the Vertex portfolio within the resources available to the HSE. We sought to include every drug in the portfolio deal. Vertex was not willing to do so. At the time of the negotiations an enormous amount of money had to be approved to provide access to those drugs. As we exited the negotiation, we made clear to Vertex that it would be almost impossible for us to find additional resources for access to additional drugs from the Vertex portfolio.

Since 2017 the HSE has spent more than €300 million. I cannot give the exact figure because it is commercially confidential. It has provided Vertex with more than €300 million for access to the cystic fibrosis drugs. The HSE is committed in the next five years to providing well in excess of another €300 million to Vertex for access to the new drugs.

Between 2017 and 2021 the HSE was dealing with the same negotiating team, in the main. Three amendments were made to the deal. On each occasion Vertex acknowledged the position the HSE had taken in 2017 and provided access to additional patients. This year Vertex did not acknowledge what was said in 2017 and did not accept that was the HSE position clearly enunciated to Vertex. It has taken the view it is entitled to additional funding for those drugs. That is the position at the moment. The HSE is working as closely as it can with Vertex and has met its representatives eight times. I cannot give a timeline on outcome or a guarantee of outcome.

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