Michael Healy-Rae (Kerry, Independent) | Oireachtas source

Ireland is one of the leading countries in Europe for instances of phenylketonuria, PKU. Approximately one in every 4,500 babies born in Ireland has PKU in contrast to the United Kingdom, where the figure is approximately one in every 12,000, and further afield in the United States, where the condition is even rarer, affecting only one in every 15,000 newborns each year. In Ireland we follow diet-for-life, whereby each PKU sufferer is continuously assessed from birth to determine how many grammes of protein they can have on a daily basis. This assessment is determined from blood tests, as well as weight and height measurements and these tests are ongoing for life.

In order to facilitate the healthy growth and development of PKU sufferers to supplement the often very low amount of protein they can have, foods are available on prescription through the long-term illness scheme, for example, pasta, pizza, flour milk and bread. Despite the fact Ireland has one of the highest incidences of PKU in Europe, it has one of the most limited varieties of foods available on the long-term illness scheme in comparison with our European neighbours.

Given all of this, and in order to follow a full low-protein diet, it is necessary to purchase much low-protein food from supermarkets. Unfortunately, many of these foods, for example, Violife vegan cheese, fresh fruit and vegetables, are very expensive. The PKU diet is extremely challenging for PKU patients and their families, and the consequences of not adhering to the diet are very serious. Untreated PKU can lead to brain damage, intellectual disabilities, behavioural symptoms and seizures. Ultimately, facilitating PKU patients to adhere to their diet through the provision of a good range of medical and low-protein foods, as well as innovative medicines, will improve their outcomes, resulting in lower overall costs to the health care system, as well as optimising their ability to contribute to society.

As previously mentioned, we have a very limited list of foods available on the long-term illness scheme. Will the Tánaiste outline what is the long-term illness scheme budget for PKU products each year? How is this list managed and why is the variety of foods available in neighbouring countries not available here? Will it ever be a reality to have a PKU patient or their carer involved in the decision making around the foods available to them? PKU patients, who are the end-users, need to be invited to give their input as to the value or otherwise of foods of which they, after all, are the consumers. It needs to be acknowledged that some of the foods available on the long-term illness scheme are of much poorer quality than those available in other European countries, a prime example of this being the quality of breads, a staple of any diet. We should also note that an increased selection of foods of a better quality does not necessarily equate to increased costs.

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