Sorca Clarke (Longford-Westmeath, Sinn Fein)

I thank the witnesses for coming in this morning. They are very welcome. This is an issue that comes up for me on a regular basis, even though we are talking about rare diseases. I think most other committee members would have the same experience.

The question I want to put is on that relationship that exists between the health technology assessment, the legislation around price and supply, the HSE, the medical professionals and the patient. There is a very specific reason I ask this question. Earlier this summer in my constituency, a little boy, Toby, was born at the end of May. By the June bank holiday weekend, when he was a few days old, Toby was intubated. He was in ICU in Temple Street hospital. Toby's mum, Lucy, is a nurse and she knew exactly what was happening. His dad was, for the majority of the earlier time of Toby's illness, looking after their toddler who was at home. Toby has propionic acidemia, which is a rare metabolic condition whereby he cannot break down proteins, which leads to a build-up of acid that could damage his liver and brain and lead to coma. The application for his medication was refused on the basis of economic and budgetary impact. This was despite the fact that Temple Street and the wonderful staff there - Lucy and Niall sing their praises consistently and constantly - sent Toby home with a ten-day supply. After four weeks of being in hospital, this ten-day supply of medication allowed Toby to return home and to have a normal life back with his mum, dad, sister and family. This is lifesaving medication.

Why do TDs have to get involved? Why were we in a position of sending in representations on behalf of this family? I am not a doctor. Please do not come to me looking for help with your car, because I am also not a mechanic. I know what I can and cannot do, but I should not be going to a Minister or anybody seeking medication for an incredibly sick little boy when the doctors have provided it to him to allow him to come home. I want to know how that relationship works.

To be frank, when Ms McGrath said "gatekeeper", I had it written down. I want to know why that situation happened, because that should never happen. Where is the lack of connectivity between the structures that we have that result in TDs making representations for medication?