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

I was in Farmleigh ten years ago when the then Minister, James Reilly, started dealing with the issue of rare diseases. I am disappointed that we have made very little progress in real terms. While some progress has been made, it is not enough. I refer to the report by the Joint Committee on Health in 2018, which set out approximately 15 or 16 recommendations about access to drugs where rare diseases are concerned. It was published on 28 February 2018. I ask the Minister and the Department to go back and look at the report to see how we can fast-track the processing of drugs that are required for people with rare diseases.

The big challenge we now have is in relation to the pharmaceutical industry. Because Ireland is a small country in real terms, the number of people with a particular rare disease is always small, so we are not attractive to a company to come in and go through the process here when it has already been assessed by the European Medicines Agency. I ask that we review how we deal with this issue. How can we fast-track the process? How can we make the drugs available in a timely manner? Remember, the parents of these children have huge challenges in dealing with the complex conditions. Then, they find that they cannot get access to medication that is available in other jurisdictions. The homework was already done by the health committee back in 2018. Let us look at that again and see how we can fast-track the access to and the availability of the medication that people will require.

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