Kieran O'Donnell (Fine Gael) | Oireachtas source

I welcome the Minister to the House. This is an extremely important issue. To bring it down to basics, people with cystic fibrosis did not wake up one morning and say, "I want cystic fibrosis". I know many people with the condition. I am thinking in particular of a young woman in her early 20s. She is in college and is bright and articulate. I have spoken to her about Orkambi as she would qualify for it. She is not looking for an improvement in her lung capacity but just wants it to be stabilised. If her lung capacity can be maintained at its current level she can live a normal life and stay out of hospital. She is not looking for a rapid rate of increase in her lung capacity but for stability.

I have met representatives of Vertex, as have many others, and it must be said that without Vertex, Orkambi and Kalydeco would not be available. The company did the necessary research. The question is whether the charge for these drugs is effectively extortion.

Confidentiality is normal in commercial discussions but in this particular case, the details should be made public. Furthermore, discussions must recommence with immediate effect because we are dealing with peoples' lives. As a society, we must make both moral and financial decisions. This is business and the best negotiators we have must be in the room with Vertex. The company must come to the table and make a deal that is fair. We need to put a results or risk-based model in place. We are not certain how many people will benefit from using Orkambi and we must put a pricing structure in place that reflects that. The discussions are critical and Vertex must engage with a view to striking a price that is fair. The HSE must find a way to make Orkambi available to those people who so desperately need it.

I welcome the fact that a new cystic fibrosis unit has opened in University Hospital Limerick. There are nine isolation beds in the unit which is very significant. However, University Hospital Limerick urgently needs 96 new acute beds. The numbers going through the accident and emergency department, an estimated 64,000 this year, are the highest in the country. Cork has 800 beds for an estimated 60,000 people while Limerick has only 400 beds. I ask the Minister to provide money to University Hospital Limerick to enable the design process to begin before the mid-term capital review. The sum of €25 million is urgently needed.