Seanad debates

Thursday, 8 December 2016

Cystic Fibrosis Treatment: Statements

 

10:30 am

Photo of Simon HarrisSimon Harris (Wicklow, Fine Gael) | Oireachtas source

I thank all Senators from all sides of the House for the great solidarity we have collectively shown today with cystic fibrosis patients in this country and for the very clear message we have collectively sent to Vertex, the drugs company. We want to make this drug available for our people, we want to pay a reasonable and fair price but we will not have extortion of our people and we will not have our cystic fibrosis patients used as pawns or held to ransom, as Senator Byrne has said.

I begin by urging Vertex to stop talking through the media and start talking again in a room with the HSE, which is the organisation that this and the other House have decided will negotiate on drug prices. That can start immediately. There should be no preconditions for those talks. There is no need for any faffing about here. We need to get back on track with this negotiation and that can happen today. Senator Swanick referenced Jillian McNulty and I too want to pay tribute to her. I am reluctant to name any one person because it affects so many people but she has been a very vocal advocate on this issue. She has also been a vocal advocate full of common sense. She and many people with cystic fibrosis have better things to be doing than protesting outside the gates of Leinster House. None of us wants that to happen. We want this to be resolved.

A number of Senators mentioned the benefit of Orkambi. Let me be clear, I believe there is a benefit to Orkambi. I am not medically qualified to believe that but I believe it because that is what the doctors tell us. That is what Professor Barry tells us. It is what the patients tell us. The benefit is beyond doubt. That is not what this debate is about. It is about a fair price and making sure we do not have a company that has a monopoly and says it has this medication but we cannot have it for our patients unless we pay a ridiculously large sum of money. I also agree with people who say companies must get their money back. Whatever one thinks of pharmaceutical companies, they are businesses and have priorities in that regard. However, the valid point was made by Senator Reilly that lots of drug companies receive research and development grants and tax incentives. This company in particular received a number of charitable contributions towards the development of this drug. Let us not get caught up in this idea that the company has pumped loads of money in and it must get all the money back. It also must recognise that it received a lot of assistance, including from charitable sources, in developing this drug. That is important.

I thank Senator Craughwell for the tribute he paid to Professor Michael Barry. It is one that is very fitting. He is a man full of integrity who has worked tirelessly and has not been afraid to get out front and centre and explain the rationale to people. When I became Minister for Health, I said it was very important we did not have politicians making clinical decisions. I would certainly rather have decisions and determinations made by somebody called Professor Barry than Minister Whatever. I thank him and his team for their ongoing work in a very difficult area. I agree with Senator Craughwell and many other Senators, including Senators Byrne, Reilly, Dolan and Devine on European collaboration. It is very important. We cannot just be in a Single Market for certain things when it suits us. This is an area where there are huge chances to make progress. It was palpable yesterday when I met with a number of EU health ministers in Lisbon that they too want to get engaged in this. Already the Benelux countries have piloted the purchasing of a number of medicines, three I understand, through an arrangement. My officials are working with the Dutch to see if there is a potential for Ireland to get further involved in that group.

I also thank Senators for pointing out that we, as a country, have decided who does the negotiation and no pharmaceutical company will make that decision for us. These are the rules of our land. If they want to negotiate in our country, they should come in and respect the law of our land, just as we would respect the law of theirs. That is an important point.

On the confidentiality agreement and Senator Colm Burke's suggestion that it should be waived, it certainly would be very helpful. There is much misinformation out there and many reports that the company has said one thing and the HSE has said another. That is just getting terribly confusing for everybody. I would like to see a situation where we could keep the likes of CF Ireland up to date with accurate factual information about what stage the negotiations are at and what the strategy is and to be able to ask them what its members think. If Vertex was to waive that confidentiality agreement, it would be very helpful.

I agree with Senator Devine. This is a heartbreaking situation. Party politics aside, we all want to resolve this. The Senator's call for cool heads to prevail is valid. There is no need for preconditions from people but just the need for people to get back in the room. I will take on board the suggestion the Senator made about our assessment system in general. For the record of the House, it might be useful to say there is a clear enough assessment process in place. The National Centre for Pharmaeconomics, NCPE, carries out the health assessment of the drug. It goes to a HSE drugs group which has clinicians on it. That group then makes a recommendation to the HSE. Only if the HSE does not have the money to purchase the drug or if it needs additional resources does it come to the Minister of the day. To mount pressure politically and engage in that kind of emotive debate and say the Minister should go in and sort it out is very helpful for the drugs companies. That is not what the law our land says and is not the process we have in place. If we deviate from that on this drug, where do we end up next week or the week after with another drug? I fully agree with Senators who talk about risk-sharing or what we call outcome-based pricing. This is clearly a very innovative process. Vertex believes it will work for many patients. I believe it works for many patients. Let us pay for those for whom it works. It is regrettable that Vertex was not interested in that model but let us hope they re-engage on it. I encourage the company to re-engage on it.

On the issue of University Hospital Limerick that Senators Kieran O'Donnell and Byrne raised, there are pressures there and I will examine the issues raised and revert to the Senators.I genuinely thank Senators for their support.

Senator Mark Daly asked the clear question about what other countries have done a deal with Vertex on Orkambi. To the best of my knowledge, Austria very recently reached a deal to make the drug available to its public patients. I am not sure of the terms and conditions of the deal but, as far as my research shows, no other EU country, or indeed any other country, has managed to make the drug available to its public health patients through an agreed reimbursement price. We are therefore not on our own in this regard, and this is the point. Ireland is not an outlier. Colleagues around the globe are finding the same pressures, and it is therefore time for Vertex to reconsider its strategy in this regard.

I acknowledge the point Senator Reilly made about the drugs industry in this country. Not every drug company behaves like Vertex does, and this is an important point to make too. We have a drugs agreement in place that will see significant savings of €750 million. It was hard-fought and negotiated by the HSE and officials in the Department of Health with the Irish Pharmaceutical Healthcare Association, IPHA. I acknowledge IPHA's comments this week that it wants to be very clear that Vertex is not a member of its group and does not act or speak for it.

I would be happy to come back before the House to have a more substantial discussion about the issue of organ donation, as requested by Senators Mark Daly and James Reilly. That would be very useful.

Finally, I say to CF patients and their families that we are doing everything we possibly can and we will do everything we possibly can. Let the negotiations recommence without posturing, faffing around or preconditions. However, I will not be bullied or intimidated by these drug companies, I will not ignore the laws or our land and I will not stand for the exploitation of our country.

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