Ms Vicky McGrath:

We need to push for a risk-based assessment. As gene therapies come along, it will force us to re-evaluate how we pay for medicines and what we will pay upfront as compared with staged payments. This may be something at which we need to look across the board. We have to leverage Europe. When one considers that more than 90% of orphan drugs are available in Germany but we are down at 16% or 17%, it is absolute madness. It is very frustrating for people living in Ireland to see other EU citizens getting access to these medicines. The dominating force in the current legislation is around pricing and saving money, but one must ask on whose behalf the money is being saved. It is potentially saving the health service money but that is not of benefit to society. We can pinch pennies within the health service budget but that does not necessarily lead to better outcomes for people and families and it does not allow children to be educated properly. Many other considerations must be included in this regard. A major overhaul of the system in the short term is needed. We need to look at how other countries in Europe are doing this and what we can do. We may end up spending a bit more money in some areas but we will make savings in others. It is ludicrous that it is purely, dare I say, a black-and-white issue of money and pricing that is driving these delays in access to medicines in this country.