Keith Swanick (Fianna Fail) | Oireachtas source

I welcome the Minister to the House to discuss this important issue. On Tuesday, many of us listened in the AV room as Ms Jillian McNulty gave a heart-wrenching account of what her life is like living with cystic fibrosis. In Jillian's words, without Orkambi, she would not be here. Her lung function has improved by almost 10% and she has spent up to a year less in hospital. Jillian’s situation is unfortunately not unique. Ireland has one of the most severe strains of cystic fibrosis in the world and the highest incidence per head of population, which is three times the rate in the United States and the rest of the European Union. Ireland should be at the forefront of new technologies, research and strategies to deal with the condition, but we are not.

About 550 to 600 people in Ireland with CF have the potential to benefit from Orkambi. That is 600 lives which could be improved beyond recognition. I understand the Minister, Deputy Harris, travelled to Portugal yesterday for an EU health Ministers meeting on pharmaceutical drug costs. He sought the assistance of other EU nations to force pharmaceutical firms to slash exorbitant prices, which make it effectively impossible to access new treatments. We need to be realistic here. Vertex Pharmaceuticals has asked the State to pay approximately €150,000 per person annually for the drug and HSE experts are saying a price of €30,000 is fairer. The HSE has challenged the company to stop hiding behind confidentiality clauses.

I welcome the statement by Vertex Pharmaceuticals last night that said it would be entering into renegotiations with the HSE in an effort to reach an agreement on costs. The statement included the following: "Vertex has met with HSE representatives six times in five months, presenting a range of specific workable proposals that could expedite access for all eligible patients." Vertex has said that it has received no response from the HSE to date. The statement continued: "These proposals have included significant price reductions, guarantees of budget certainty, novel access schemes such as a risk-sharing agreement and ways to reduce the timelines on reimbursement decisions for patients in the future as new medicines become available."

If this is true, it is simply shocking. The clock is quite literally ticking for these people. It is a matter of life and death. On the one hand, Vertex invested millions in developing new ground-breaking drugs for CF and there are not many patients on which to make a return. Vertex claims it has to get its money back to reinvest in further research. On the other hand, the HSE has the right to get the best price for the product, which is fully supported by Cystic Fibrosis Ireland. We have to be mindful that this is the first drug to treat the underlying cause of the double delta-F508 strain of cystic fibrosis. The drug slows down the progression of cystic fibrosis and reduces hospital admissions by 40%. We all know that a hospital bed costs €1,200 per day. It may make the difference for a patient receiving a lung transplant or not. There is enormous human cost to the patient as well as the financial cost to the State. At the end of the day, a solution needs to be found. If the two parties cannot reach agreement on price, consideration should be given to bringing in an international mediator to arbitrate on this matter to the satisfaction of all.

Before I finish, I will describe an anecdotal situation. In my own area in the west of Ireland, there is a family that I am very much aware of. A good few of the siblings have cystic fibrosis. One young girl lost her life to cystic fibrosis a number of years back. Her brother lost his life to suicide. He also had cystic fibrosis and suffered from a perceived lack of hope. Now that there is a drug that can help, let us all work together to ensure that the people who deserve to get this drug get it in a timely matter.