John Brassil (Kerry, Fianna Fail) | Oireachtas source

I welcome that. I would love to see a budget for orphan drugs. I have asked, again on several occasions, for a specific breakdown and I keep getting the reply that there is nothing in the Act to differentiate orphan drugs from any other drug. That needs to be changed. That is why I have submitted a Bill to change the legislative position in order to allow for orphan drugs to be treated separately. If they were treated separately and there was a separate budget for them, then the savings that were made on one side could be looked at towards providing on the other.

With my last contribution, I want the witnesses to look at the Swedish model. They, ironically, have the same proportion of health expenditure and medical goods as we do, yet they use a qualitative analysis in their orphan drugs reimbursement but do not set a threshold. They take the types of things we have been talking about - patient advocacy, human value and cost-effectiveness - over a very small patient group.

When one is looking for data, particularly for an ultra-rare disease, it is almost impossible to get because there might only be half a dozen patients and the type of assessment that is being undertaken will not facilitate this.