Frances Fitzgerald (Dublin Mid West, Fine Gael) | Oireachtas source

I thank the Deputy. As we know, PKU is a very debilitating condition and sufferers must have an extremely low-protein diet to avoid the worst effects of the disease. In Ireland we have a very comprehensive screening programme because, as the Deputy rightly said, there is a very high incidence compared with other countries. What is a needed is a lifetime management process for patients who have this condition, known as diet-for-life, which provides continuous individual monitoring and assessment of patients.

Low protein and technical dietary items for PKU patients are available free of charge under the long-term illness scheme. The Deputy asked about the scale of that availability and about the amount of money allocated at present. The most recent data available show that expenditure on these products for one year from December 2015 to November 2016 was approximately €4.8 million. In 2016, an expert group was formed which was drawn from both hospital and community settings. Revised guidelines on the application for reimbursement of clinical nutritional products was looked at and in November last year, the HSE published those guidelines and suppliers were notified that the applications were being accepted. A number of new applications were received and it is hoped this will broaden the list of the products available. In January 2017 the expert group considered the applications that have been received and the applicants will be notified of the outcome in the coming weeks.

When a product is approved for addition to the reimbursement list, it is seamlessly available to a person with PKU under their long-term illness eligibility. The next opportunity for submitting applications for clinical nutritional products to be added to that reimbursement list is expected in June. As for the drug sapropterin, the National Centre for Pharmacoeconomics is currently considering a new application in that regard which it received in February. The HSE will be considering that and deciding on the reimbursement in regard to it.

The Deputy raises an issue which is of concern to a huge number of people throughout the country. Quite an amount of work has been done on this in terms of the recommendations of the working group being examined by the HSE, and decisions are expected in the next period.

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