John Dolan (Independent) | Oireachtas source

I thank the Chairman. Patience is what it is all about today, in respect of patients waiting too long and the terrible situations they are in. Professor Barry stole a line from me when he said there is nothing rare about rare diseases. In round terms, how many people across their lives will have, or are likely to have, a rare disease? With scientific, technical and medical advances are there likely to be more people diagnosed with rare diseases over time?

I want to discuss timelines. Because of my own background with the disability movement, I know a lot of the people, patients groups and organisations. The representatives from the Alpha One Foundation and Muscular Dystrophy Ireland are coming in to the committee soon. The days, weeks and months matter in giving relief and in keeping and arresting the decline in quality of life for people. In other words, let us be clear and blunt about it; delays have economic and social consequences in the impact on families and family attrition. What can be done? Are there some ways to actually improve the timeliness? I am not long a member of this committee. I have been here for one year and I am struck by the timelines. Is it going to be drug by drug, patient group by patient group, year by year coming back in to the committee trying to sort it out case by case? A way has to be found. We would all be annoyed by that timeline but that is nothing to the impact it has on the people affected. There must be some better way. I am struck by the idea that there must be rare conditions across the cancer family but I am not hearing those issues getting raised in the same way I hear about these other conditions. Am I right or is there some aspect of how we deal with the cancer family that we are not bringing into play here? Maybe it is not as simple as that.

My final point is about the small numbers. It seems to be an issue. Consider the community rating. Rather than saying there are only so many with a condition would it be a fairer and more reasonable way to look at the issue by taking the burden off the two dozen or 200 people who have a condition in their families and say that the genetic cards could drop differently and this is something that could happen to anybody? Should we look at the basket and say that rare conditions are not so rare and could possibly become less uncommon in the future so we must take the burden of the costs off the shoulders of named people?