Lack of low-protein foods an issue for people with rare illnesses

Minister of State for Communities and the National Drugs Strategy Catherine Byrne has said she would like to see an expansion of the range of items available to people with rare medical conditions.

“Over a decade ago, the situation was similar for gluten-free foods, especially for dietary staples like bread,’’ she said.

“Now, quality, choice and availability have vastly improved and people who need these items can get them in a wide range of outlets.’’

Ms Byrne was replying in the Seanad to Fine Gael Senator Catherine Noone who said the lack of low-protein foods was very serious for those with metabolic illnesses.

About one in every 45,000 babies born in Ireland is diagnosed with phenylketonuria (PKU) and about one in every 65,000 babies born has homocystinuria (HCU).

“Both are very rare genetic disorders causing the body to be incapable of breaking down amino acids, which are present in protein foods,’’ Ms Noone added.

“This is a metabolic disorder and patients must manage their lifelong illnesses with a low-protein diet to prevent neurological damage.’’

She said obtaining low-protein foods was proving to be increasingly difficult in Ireland.

Frustrated

She knew of a parent, two of whose children were suffering from HCU, who was frustrated by the lack of high-quality low-protein food products in the Irish market in general or on the long-term illness card.

Ms Noone said a full and appropriate list of foods prescribed for PKU and HCU should be added to the reimbursement list.

Ms Byrne said essential clinical nutritional products, specifically for PKU and HCU, as well as some low-protein foodstuffs, were reimbursed under the community drugs schemes. She was aware there had been little or no variation on the list for several years, she added.

She said PKU was on the long-term illness scheme and the HSE had, in the past, made exceptional arrangements for essentials such as bread and other similar products.