Sharon Keogan (Independent) | Oireachtas source

I wish to raise the issue of the 35 Irish children with cystic fibrosis who are not yet being supplied with Kaftrio, a groundbreaking and life-saving drug.Many of us know that the exclusion of the 35 children stems from a price dispute between the HSE and the manufacturer Vertex and the fact that their inclusion was not foreseen in a 2017 pipeline agreement. All other eligible children and adults with cystic fibrosis in Ireland have already gained access to Kaftrio with the exception of the 35 children at the centre of this dispute. Lack of agreement could delay access to Kaftrio for up to five years for some children. Without Kaftrio, some might not even make it that far. However, the HSE's corporate pharmaceutical unit and Vertex have tied themselves up in a pricing dispute. Despite having met multiple times from the start of the year, there has been no meeting between them since 4 July. That means more than two months of no progress.

I raised this issue in the Chamber in June and it was raised in the Dáil as a parliamentary question in May. The response was that talks were ongoing. We were not told that negotiations would take a primary school summer holiday. Seeing as how neither the HSE nor the Minister seem to be prioritising their interactions with Vertex, I decided to reach out to it myself. I spoke on the phone yesterday to its executive country manager who filled me in about the negotiations. I am sure the families of the children in question would be interested to hear that Vertex actually offered to cover these children at the same cost per patient as in the existing agreement but as this would involve an additional budget commitment by the HSE, it was not quite good enough. It was not one of the many mantras of Covid along the lines that "we should not be gambling with lives" but apparently haggling is okay. I met Philip Watt, the CEO of Cystic Fibrosis Ireland, outside Leinster House this afternoon. People with cystic fibrosis do not need more boardroom meetings or margins in an Excel spreadsheet. They need that medicine and we need to get it for them. I heard children talking out there today. I saw families who have lost daughters and daughters who now have children with cystic fibrosis waiting on this drug. It is criminal that we are not signing this document this week.