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Dáil
‹ Questions on Promised Legislation

Orkambi and international collaboration

Summary

Deputy MacSharry welcomed the long-awaited Orkambi decision and linked it to promised legislation and European cooperation on breakthrough drugs. The Taoiseach praised the decision as visionary and suggested a future debate on better international collaboration.

In anticipation of the Taoiseach once again delegating this answer to Deputy Harris, I suggest that Deputy Harris might yet throw his hat in the ring. He seems to be doing a large amount in terms of leadership.

Other Members have welcomed the long-awaited decision on Orkambi. Page 64 of the programme for Government deals with this matter and the Government's use of European initiatives for breakthrough drugs such as Orkambi and others. I will not get back into the quite intemperate contributions from all Members of the House in their frustration over the considerable period they were waiting for this decision to come. We welcome it now and we commend all involved in bringing it about, such as Jillian McNulty, Cystic Fibrosis Ireland, the company itself and others.

However, there is a major problem with the process here. We must look to the European example, such as the early access programme in Germany and France where these breakthrough drugs can be made available immediately while the health technology assessments, HTAs, are being carried out and while the matter is being considered. In comparison, our process is very obscure and lengthy. It goes to the National Centre for Pharmacoeconomics, NCPE, which seems to take about a year. It then goes to a drugs committee in the HSE which has a complete budgetary focus. Nobody knows who is on that committee. At present, there are 31 drugs lost between the National Centre for Pharmacoeconomics and the drugs committee. People's only recourse is Joe Duffy's radio show-----

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Pat the Cope Gallagher An Leas-Cheann Comhairle Fianna Fáil

The Minister for Health, Deputy Harris, to reply. We have a number of Members waiting to ask questions, Deputy MacSharry.

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-----and public protest. That is surely not the way forward.

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Enda Kenny The Taoiseach Fine Gael

Deputy MacSharry has raised this matter vociferously on a number of occasions. While I acknowledge the wait has been long for sufferers of cystic fibrosis, what the Minister for Health has done here is quite visionary, in that it is a first in Europe. I hope this process can be followed through with other drugs companies and that we will have portfolios of drugs giving certainty and stability to those who suffer from a range of challenges. That will provide them with the best emotional support in the challenge that they face.

I would like to thank young Aisling, who I met at the protest in Sligo. She presented me with a letter on behalf of all of those who attended who face the challenge of cystic fibrosis. For them and for users of Kalydeco, today is an important day. I hope that from 1 May it will bring an enhanced quality of life for all those people around the country.

I ask the Minister for Health, Deputy Harris, to comment on the process that Deputy MacSharry referred to.

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Pat the Cope Gallagher An Leas-Cheann Comhairle Fianna Fáil

No, I call Deputy Cassells. Does the Minister wish to make a comment? You cannot both answer; it should be one or the other.

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I only wish to answer the Deputy's question but I do not wish to-----

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Pat the Cope Gallagher An Leas-Cheann Comhairle Fianna Fáil

Many irate Deputies are rightly waiting.

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The Leas-Cheann Comhairle is correct.

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Enda Kenny The Taoiseach Fine Gael

It is a one-two.

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Deputy MacSharry is correct in what he says about the importance of international collaboration.

In the aftermath of this it would be very useful if we could set aside time in the future to have a debate on how we can collaborate better at an international level.

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