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

I thank the Minister for attending the rare disease event we had today in the audiovisual room. She is the first Minister for Health who attended one of our meetings and it was greatly appreciated. As I said to her afterwards, there is a degree of optimism among the community that things might improve in the coming years under her stewardship. We are looking forward to working with her. I remind Members that Rare Disease Day is on Friday, the last day of the month. We talk about many constituency matters in here. There is a large community of rare disease sufferers, nearly half a million people in this country. They represent a large electorate in their own right. It is important to acknowledge and speak about the difficulties they face.

One of the first things the Minister did when she was appointed was to publish the genomic strategy or she certainly attended an event to launch it. I view something like that as part of the building blocks about how we get our health system right. The creation of a register not just for people who suffer from rare diseases but in terms of developing our ehealth strategy is part of the fundamental building blocks that need to be in place before doing anything else. I urge the Minister to get those fundamental building blocks right.

In the rare diseases briefing today, we were given submissions indicating that, on average, it takes up to six years for somebody suffering from a rare disease to actually be diagnosed. That is six years of appointments and different examinations with consultants and GPs. All that type of stuff contributes to expanding waiting lists because people are on the journey to try to find out what is wrong with them in many cases. If extra resources are devoted to the identification and the diagnosis of rare disease in the first place, we will be able to unclog parts of that system which is full of people seeking answers as to what is wrong with them.

Fundamental to this is access to orphan drugs. I spoke to the Minister two weeks ago about how in Ireland on average it takes anywhere from 500 to 1,000 days to get some of these drugs approved. We are talking about health and people being healthy into the future. Early identification and diagnosis of disease is crucial, as is the treatment. In many cases, if these people get treated early with the necessary medicines and treatments, we can make sure they are productive members of society, they can continue to work, they will not require care and the number of times they have to attend hospital can be reduced. I would like the Minister to look at that piece in its totality. I know it is in the programme for Government and she has said she will. I urge her to give it the attention it deserves.

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