Approximately 1 in every 45,000 babies born in Ireland is diagnosed with Phenylketonuria (PKU) and 1 in every 65,000 babies born in Ireland is diagnosed with Homocystinuria (HCU). Both are rare genetic disorders causing the body to be incapable of breaking down certain amino acids.
This is a metabolic disorder and patients must manage their life-long illness with a low-protein diet to prevent neurological damage, but this is proving to be increasingly difficult here in Ireland.
I recently received a letter from a mother, of which two of her children suffer from Homocystenuria (HCU). Prescribed low protein foods are crucial to managing their diets.
She is becoming increasingly frustrated as not only are low-protein food products not readily available in local shops, but there is also a lack of available high quality low-protein food products in the Irish market in general or on the long term illness card in Ireland.
Taking into account the fact that prescribed low protein foods are required to prevent neurological damage and to supplement the diet of adults and children with Phenylketonuria (PKU) and Homocystenuria (HCU) – I have asked the Minister – why no new low protein products have been added to the long-term illness card list in more than 6 years and if he will ensure a full and appropriate updated list of foods prescribed for PKU/HCU is added to the reimbursement list.