Mr. Philip Watt:

We need to use that power responsibly. I give an assurance that my organisation would never campaign for a drug we did not believe in or see the scientific evidence for. Our point was that the system was flawed so that no orphan drug would get past. That was fundamentally why we were protesting. It is great to see some reforms being put in place, partly as a legacy of that but also as a result of the work of all the patient groups. Our key point is that the reforms need to be broader. A broader strategy needs to be put in place which considers issues such as cost and where the money is going to come from, rather than simply tweaking things by putting a couple of patient representatives here and there. All that is welcome and great but it must be part of a broader change. There is also an issue in respect of how patient representatives are picked. We want to set down a marker that we should elect our own representatives and not have them hand-picked by the HSE and the Department of Health. There was an election for the rare diseases committee, which was welcome, but other processes are happening daily whereby the HSE simply picks a patient or an organisation. Those days are gone and the structures need to be much fairer and more transparent.