Ms Vicky McGrath:

I would like to say that there is not. We have ended up with a narrative concerning access to medicines and drug reimbursements that attracts much media coverage. It is not a pretty conversation and that is what has brought people to lean towards the view that a price is being applied. People in the health system dealing with their consultants and GPs, or whomever it might be, have a very different view. The best care the system can deliver will be received. There are blockages in the system and limitations on what can be done because of the infrastructure in our healthcare system. We cannot offer people access to clinical trials because we do not even know if a person is eligible for a particular trial. These are system-wide blockages, which need to be removed. Part of the problem in this regard involves the budget, but to a large extent it can also be a case of the time required and the difficulty involved. We must all say that we are going to step forward and start making the required changes.

It worries me that people think it is all about the price of a drug; it is not. There are so many other elements. Many people are living with rare conditions that will never see a therapy devised and they are seeking supports in the community to allow them to lead the best life that is possible for them and their families. We cannot put all the aspects involved down to there just being a price. There is not. We need a system. We heard Dr. Lynch talk about the role of training geneticists. That should not be an issue. We have similar problems with healthcare providers and supports in other areas, such as in psychotherapy, for example. Some psychotherapists and other specialists may be reluctant to deal with people living with rare conditions they do not know about or understand. They are concerned that the result of their intervention might be more harmful than beneficial. We must create the requisite knowledge, awareness and understanding in such areas and show people we are willing to give them the best lives possible, notwithstanding the fact that a therapy may not be available. Where therapies are available, we require a system that will provide them as quickly as possible.