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Dáil
‹ Ceisteanna ar Pholasaí nó ar Reachtaíocht - Questions on Policy or Legislation

Rare diseases and reimbursement

Summary

Deputy O'Sullivan presses for reform of the reimbursement process for orphan drugs and rare diseases, citing disappointment over Kaftrio. The Tánaiste says he understands the frustration and agrees more treatments available elsewhere should be reimbursed here.

I have raised the issue of orphan drugs and rare diseases with the Tánaiste before. It is fitting that I raise again this week, given the announcement in relation to Kaftrio this week and the disappointment that that has caused for that cohort of patients.

The Minister for Health, Deputy Donnelly, has previously given me a commitment that he will publish the Mazars report into the reimbursement process and that is welcome. While I welcome that, there is so much more we can do, including risk sharing and conditional reimbursement. All these steps are being taken in other EU countries and we are laggards in that regard. I am just asking that when the Tánaiste assumes the office of Taoiseach in the coming weeks he will give this issue the attention it deserves and will prioritise it.

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Leo Varadkar The Tánaiste Fine Gael

My grandmother always told me not to tempt fate so I prefer not to assume that I will be elected Taoiseach again on Saturday week, but I thank the Deputy for his kind words. I agree that this is an issue that we need to turn around, next year hopefully. I have served as Minister for Health, I am a Deputy and I am Minister for Enterprise, Trade and Employment, and I find it very hard to explain to parents and to patients why there are treatments that are available in Britain or in other European countries that are not reimbursed here. I find it hard as a Deputy as well as a doctor. As the Minister for Enterprise, Trade and Employment, I find it hard to explain to companies why medicines that they produce here and develop here are not available to patients here. We have seen some big improvements in the past couple of years. Money has been set aside that has been dedicated to new medicines. I think 30 or 50 molecules were approved in the last year, but it is clearly still a problem, and it is a matter in which I will take a personal interest.

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