Martin Conway (Fine Gael)
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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.

Mary Butler (Waterford, Fianna Fail)
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I thank the Senator for the opportunity to address the House on this important matter, which I am taking on behalf of Minister for Health, Deputy Stephen Donnelly.

As the Senator will be aware, the Mater Misericordiae University Hospital is the designated site for the National Centre for Inherited Metabolic Disorders for adults. This centre provides assessment and treatment to adults with inherited metabolic disorders. It is also responsible for the diagnosis and management of these patients. Inherited metabolic disorders include a diverse group of rare conditions that can result in significant morbidity and mortality. Presentation may occur at any age. With advances in healthcare delivery and new therapeutic interventions an increasing number of affected children whose lifespan previously would have been severely curtailed are now reaching adulthood.

The adult metabolic service in the Mater hospital provides multidisciplinary care for patients with metabolic disorders. These disorders include phenylketonuria, PKU, which the Senator has spoken about, galactosemia and lysosomal disease. This important service helps patients to manage their conditions with optimal diets that match their metabolic needs. The HSE has informed me that current staffing in this important service at the Mater hospital is 12.5 whole-time equivalents. This team includes consultants, non-consultant hospital doctors, nursing staff, dieticians, a medical social worker, a psychologist and administration staff. Currently, approximately 900 adult patients attend the metabolic service at the Mater hospital. It is anticipated that will increase by at least 100 additional patients per annum over the next five years. These additional patients will include transition patients from the paediatric services located in Children's Health Ireland, CHI, at Temple Street. In addition to the above, the centre tests patients' responses to therapies for PKU treatment.

Since August 2019, newborns diagnosed with PKU have been tested in CHI at Temple Street and treated, when responsive, with Kuvan. There are also a number of patients with known dietary requirements who have been trialled on this medication. Once a child is placed on Kuvan, this treatment is expected to be lifelong. To date, access to Kuvan has not been available for PKU adults attending the centre at the Mater hospital, other than for three patients who received ongoing approval following an earlier phase 3 clinical trial extension.

I have some good news for the Senator. I have been informed that the HSE and the Mater hospital have now agreed appropriate funding levels for 15.6 whole-time equivalent staff and the Mater hospital is commencing this recruitment process. With this resource in place, the centre at the Mater hospital will begin to expand the service to meet current and future requirements. This resource will also support provision of Kuvan trialling and monitoring for appropriate patients with PKU. I am assured that the HSE and the Ireland East Hospital Group remain committed to the progressive development of metabolic services at the Mater hospital and to improving this service for patients of the Ireland east region.

Martin Conway (Fine Gael)
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I thank the Minister of State for the comprehensive update. It is very positive news. I sincerely hope that the recruitment of the additional three or four whole-time equivalents happens and that it does not fall into the HSE ambitious plans for recruitment that does not happen.This is specialised and critical and I imagine it will have to be an international recruitment process. The reason people want adults to avail of Kuvan, in particular, relates to the fact they have seen its success with children and the difference it makes. The adults the Minister of State mentioned who are continuing to use it in their lives following the trial have benefited from it.

Given there are clear benefits and the results speak for themselves, it is essential that this happens. I sincerely hope the recruitment will happen in 2022, with Kuvan rolled out this year also. The Minister of State might stress to the HSE, perhaps even in writing to the chief executive, the need to put this on the priority recruitment radar, even above and beyond other recruitment, in order that it will be made a top priority of the HSE.

Mary Butler (Waterford, Fianna Fail)
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The Senator is absolutely correct. As he will have heard in my earlier response, it is anticipated the number of patients presenting will increase by at least 100 per annum over the next five years, so we have to build capacity. There are currently 12.5 whole-time equivalents in the adult metabolic service at the Mater hospital and that figure will increase to 15.6, or an additional three posts. That is welcome and recruitment should be commenced as a matter of priority.

The recruitment of the additional staff agreed between the hospital and the HSE will enable the service to expand to meet future requirements, including the provision of Kuvan trialling and monitoring for appropriate patients with PKU. As I said earlier, children who are put on the drug remain on it, but it is not as accessible for some adults. I will certainly convey the Senator's concerns to the Minister for Health and I thank him for raising the issue.