Colm Burke (Cork North Central, Fine Gael) | Oireachtas source

I thank the Minister of State. I fully appreciate the funding that has been made available. However, we need to remember the figure I gave at the start. I know very many new orphan drugs have been made available over the past two or three years. We need to remember that we are still talking about the average number of days from approval by the European Medicines Agency to being available here is 877 days. The Alliance of Rare Disease Companies and also the people who have a family member with a rare disease are looking for the appointment of a designated rare diseases liaison person within Department of Health, which is one of the recommendations. That is extremely important because everybody is dealing with a different person within the Department of Health. There is no one person they can talk to about it. That is one of the issues that is now being looked for.

The old national rare disease plan has now expired for over five years. There were 48 recommendations in that plan which were never implemented. The plan has already existed for five years. Many of the proposals in the 2014-18 plan were never implemented and would not require change of legislation to implement. I am asking that those recommendations would be looked at to see how they could be put in place.

The 2018 Oireachtas Joint Committee on Health report was quite specific on the avenue that the Department could go down to try to expedite the process for people with a rare disease. We need to remember that for somebody with a rare disease time is of the essence. If they cannot get access to medication, it will not help them get the appropriate treatment. We now need to go forward, look at the old plan and see what can be put in place without having to wait for the new plan but also progressing the new plan and putting in set timescales for the implementation of the terms of that new plan.

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