Pádraig O'Sullivan (Cork North Central, Fianna Fail) | Oireachtas source

I thank the Minister for taking the time to be here. I also thank Deputy John Lahart who cannot be here today. He has given me some of his time, which I appreciate. The Minister will be glad to hear that I will start on a positive note by acknowledging the role he has played over the last few years in making progress on this issue. Much of this has been outlined by the Minister in his opening statement. The expansion of screening is a major bonus for those families. The Minister referred to Les Martin, who we both know well at this stage, and the other great advocates who have been involved on that side of things. I also acknowledge that the Minister has kick-started the rare disease plan and, hopefully, that will come through in the next couple months. I appreciate the fact the Minister started the process. With the publication of Mazars report we will now have the online tracker, which will be a welcome tool for people in terms of improving transparency for patients.

That being said, there are still some areas that cause me concern. In his opening remarks, the Minister mentioned about having rapid access to medicines. It has been noted in various medical journals published across Europe that Ireland is consistently at the tail end in a European context when it comes to the approval of drugs. I hate to focus all my time on drugs, but we are looking at delays here of up to 1,100 days, depending on the drug and on the process that it has gone through. I said to the Minister at the start of this Government's term in office that we were looking at three-year periods for approval of drugs to go through the health technology assessment, HTA, process. Unfortunately, we are still facing those kind of delays in the process. I hope the publication of Mazars report will improve things, but that is yet to be seen. I just want to re-emphasise this.

I note that recently in the Czech Republic bespoke legislation has been published that provides a specific orphan drugs pathway. We do not have that here. Perhaps something could be done either legislatively or outside of legislation that would give us a separate process to look at the rare drugs. A lot of oncology drugs are coming on the market and we need to look at how we can get those to patients as quickly as possible.

I told the Minister the story last week of why I spend so much time talking about drugs. I met a young girl here a couple weeks ago who came in to do a presentation with Debra Ireland. I got chatting to her mother and we took a photo together in front of the Dáil. They came here to give their life experience with the illness that the poor girl suffers from. I also dealt with the pharmaceutical companies that were there with them. They have not yet lodged their application for HTA. That girl spends four hours every morning wrapping up in bandages. Unfortunately, with our process, she will spend the next three or four years of her life going through that routine every day, in agony, because of how slow and laborious the system is.

I acknowledge what the Minister has done. For the first time in many years, we have a number of drugs and the Minister mentioned the specific number that has been approved. Until the Minister came into office, we did not have any for a period of time. I acknowledge that but the frequency of the meetings where drugs are approved needs to be looked at. I do not understand why we cannot have monthly meetings of the drugs group in order to approve drugs more quickly and get them pushed through that bit quicker.

It would be remiss of me not to mention the European reference networks, ERNs. To be fair, the Minister has met a number of consultants with Deputy Lahart and me about staffing and resourcing them appropriately to feed into the rare disease plan. With the screening that I hope will be expanded, we will need the data those guys right across the Continent have. Those networks need to be resourced appropriately.

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