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

Kuvan is the other name for the drug I mentioned earlier. That was first sought in 2009 and it was refused due to lack of evidence of cost effectiveness at that time. As I said, a new application is currently under way.

The Deputy asked about domiciliary care allowance, which is payable in respect of children under 16 years with a severe disability requiring care and attention. Of course, for those children receiving domiciliary care allowance, there will now be an automatic medical card, which is a very important support to parents in that situation which the Government announced last week.

In response to the question about children with PKU, the approach is that no specific disability automatically qualifies a child for domiciliary care allowance. Eligibility is based on the care needs, not on the disability per se. Of course, the reality with young children and adults who have PKU is that the condition can vary quite substantially. For example, the various food products and interventions can be very successful for one child but not for another.

When seeing the child, the medical assessor has to take all of this into account. It is medical assessors, who are qualified and experienced doctors, who examine the application and the supporting medical evidence and make the decision. The deciding officer reviews the medical evidence and the details of the child's needs as outlined in the application form and assesses the care needs of the child. It is a very individual assessment based on the individual care needs of the child, as opposed to a category like PKU, or indeed any other disability.

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