Colm Burke (Fine Gael) | Oireachtas source

I thank the witnesses for their presentation. Regarding orphan drugs, Ireland is at a disadvantage because of the size of the country and our population. A country with a large population like Germany is able to make progress at a faster rate. I refer to recommendation 13 in our report. We had done an agreement in the past five months and the witnesses are saying there is no evidence that working closer with other countries has come into effect. Ireland's approach seems to be to deal with countries with smaller populations. Would we be better off aligning with a country with a bigger population in that we would be in a better position both in terms of assessment and trying to deal with the price issue? I am aware of a drug coming onto the market which would have benefited only ten people in the Thirty-two Counties. Of the ten, six would have had a real benefit from it, which is a very small core group of people. However, if we were dealing with a country with a larger population, more people would benefit from a particular drug. Should we examine that in a more comprehensive manner?

Regarding assessment, we seem to be going through a long process of assessment when the European Medicines Agency may have approved the drug already. There was a recommendation in our report on working with other countries in doing the assessment rather than having a team here devoting all its time to doing it when three or four countries are doing the exact same assessment. There is a duplication in that regard. I recall speaking to a pharmaceutical company that had presented more than 300 pages of documentation on its research and development of a drug here. The process seems to be drawn out. We are in the European Union. The idea was that we would work together to ensure there would be benefits for everyone thereby removing all the duplication.

My next question is on rare diseases. I dealt with a particular case of someone with epidermolysis bullosa, EB. Debra Ireland raised a simple point with me five years ago, namely, that even if patients with EB had medical cards, the cost of bandages was not covered by the medical card. I arranged a meeting with the medical card service to ensure that bandages could be made available to those on the medical card scheme. I am sure there are small areas that are being ignored because that is the regulation and we cannot bend that rule. Could we be doing much to assist patients with rare diseases that do not fit into the criteria provided in regulation or legislation because we do not have a system within the health service to help them get access to an improved level of care? It is one of the problems that tend to arise for people with rare diseases.

My final point is on cross-Border healthcare. As someone who was involved in that issue in Brussels in 2008 and 2009, the directive has now been transposed. Could we work with other countries on cross-Border healthcare and remove some of the hurdles here to getting access to care? We are doing that in many other areas. Why can we not do it much more in healthcare? We seem to be unable to do that.