Martin Conway (Fine Gael) | Oireachtas source

It is always a pleasure to have the Minister of State, Deputy Butler in the House. I am raising this matter about the adult metabolic services at the Mater hospital in Dublin. I am sure the Minister of State is aware of the importance of the work that this unit does.

However, it is, unfortunately, significantly under-resourced. There are much-needed resources required for this unit to operate at a reasonable capacity. At the moment, it is not operating to its capacity at all. It certainly is not reaching its potential and, sadly, it is not reaching the potential that it could achieve for the patients who are suffering. I am thinking particularly of the patients who are diagnosed with phenylketonuria, PKU. I am sure the Minister of State is aware of how debilitating PKU can be.

From birth, many children who are diagnosed with PKU find that their eating habits have to be completely altered. They are isolated from their peers even when they go away on school tours, trips away and so on. They have to have a special diet because of their condition. This continues into adulthood. A friend of mine has it and it is a daily struggle in terms of just putting together a diet that one would feel satisfied with and one would feel they are fulfilling the best they can in life. That is a huge strain on people. It is a huge strain on people’s mental and physical health.

We have, as a society, a responsibility to do all that we can to support these people who are a small minority of our population. Yet, Ireland has double the European average of people who suffer from PKU. Many medicines are being trialled but, unfortunately, they are not being trialled on adults because the resources are not there and the expertise is not in place at the Mater to do so. I am thinking, particularly, of a drug called Kuvan. Perhaps the Minister of State is aware of this drug. It is a new drug and it is believed it can revolutionise the lives of people who have PKU. However, it is no good to people in Ireland who are suffering from PKU because the drug is not being trialled at the Mater hospital.

Kuvan is just one drug. I believe there is much research internationally being done on PKU. There are many drugs at pretrial and trial stage in other countries. However, we are a long way down the line from ever being able to trial those drugs in this country.

PKU sufferers are citizens of this country as well. They pay their taxes the same as the rest of us.They are citizens and they have the same right to access to proper, decent healthcare and the potential to have access to new medicines that can and would transform their lives. We have spent a great deal of money on health over the past number of years for the good reason that we were in a pandemic. The spend on health in this country has increased year-on-year dating back over the past ten years. The health budget is €24 billion. When €24 billion is being spent on health, all citizens should have a reasonable expectation that they are going to benefit from it. This unit in the Mater hospital needs investment. It needs to be tooled up and resourced so that people who are suffering from PKU will have the same access as their European counterparts to ground-breaking medicines that will change their lives.