Seanad debates

Thursday, 1 December 2016

Commencement Matters

Medicinal Products Availability

10:30 am

Photo of Catherine NooneCatherine Noone (Fine Gael)
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I thank the Minister of State for coming to the House. I do a lot of work with nutritionists and dieticians. Recently some people contacted me about low-protein foods, a very specific issue that affects a relatively small sector of the population. Nonetheless it is very important to those individuals. The lack of availability of low-protein foods is very serious for those with metabolic illnesses.

Approximately one in every 45,000 babies born in Ireland is diagnosed with phenylketonuria, PKU, and approximately one in every 65,000 babies born in Ireland is born with 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. This is a metabolic disorder and patients must manage their lifelong illnesses with a low-protein diet to prevent neurological damage.

Obtaining low-protein food products is proving to be increasingly difficult in Ireland. I recently received information from an individual two of whose children are suffering from HCU. Prescribed low-protein foods are crucial to managing their diets. This individual is becoming increasingly frustrated as not only are low-protein foods not readily available in local shops, but there is also a lack of high-quality low-protein food products in the Irish market in general or on the long-term illness card.

Given that prescribed low-protein foods are required to prevent neurological damage and to supplement the diets of adults and children with PKU and HCU, why have no low-protein products been added to the long-term illness card list in more than six years? I ask the Minister for Health to ensure a full and appropriate list of foods prescribed for PKU and HCU is added to the reimbursement list.

Photo of Catherine ByrneCatherine Byrne (Dublin South Central, Fine Gael)
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I am glad to be here this morning to take this Commencement Matter on behalf of the Minister, Deputy Harris. I thank the Senator for raising this issue. PKU and HCU are lifelong conditions, with serious dietary restrictions for people who have them. Essential clinical nutritional products, specifically for PKU and HCU, as well as some low-protein foodstuffs, are reimbursed under the community drugs schemes. I am aware that there has been little or no variation in this list for several years.

The HSE primary care reimbursement service, PCRS, has just published revised guidelines for manufacturers and distributors on the reimbursement of clinical nutritional products. These guidelines were last updated four years ago. The expert group which revised the guidelines was drawn from hospital and community settings, and included procurement support. Manufacturers and distributors were consulted on the draft guidelines, as was the Food Safety Authority.

For a product to be reimbursed, the supplier must apply to the HSE for approval, and products must meet published criteria. For pricing, the HSE is prepared to consider several factors. However, there are a number of broadly similar products, and it intends to have a single price mechanism for such products, so that similar patient benefit receives similar reward. When the HSE receives applications for clinical nutritional products under the new guidelines, it must consider the approval criteria set out in the 2013 Health (Pricing and Supply of Medical Goods) Act.

Regarding reimbursement criteria, the Senator may be aware that, as PKU is on the long-term illness scheme, the HSE has, in the past, made exceptional arrangements for essentials such as bread and other like products. It is prepared do so again, on an individual basis, taking into account the price constraints I have outlined. For example, where a product is dietician-recommended and is less than an existing reimbursable item, it may continue to be approved on a patient-specific basis.

I would like to see expansion of the range of items available for people with PKU and HCU. Over a decade ago, the situation was similar for gluten-free foods, especially for dietary staples like bread. Now, quality, choice and availability have vastly improved and people who need these items can get them in a wide range of outlets.

However, the State does not commission for reimbursement - suppliers must make their products available. New products have come to market elsewhere in recent years and suppliers have not sought reimbursement yet in Ireland. Specialised products for PKU and HCU are unlikely to appear outside pharmacies, but in particular low-protein food staples should follow the path of gluten-free products. These are not technical products or specific to PKU and HCU, and should be available to anyone who wants them. I would like to see their range and availability increase, as happened for gluten-free foods, so that people on these extremely restrictive diets can have a much better choice and variety of food, as everyone else does.

That is the reply from the Minister. I have taken some notes and I will take more after the Senator responds.

Photo of Catherine NooneCatherine Noone (Fine Gael)
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I am pleased that the Minister acknowledges the deficit in this area. I am not sure that his indicating he would like to see the range and availability of these items increase is sufficient for me. Perhaps I might have a conversation with him at some point about this. I am pleased he has acknowledged the need to address the issue but there does not seem to be any particular strategy. I welcome that new guidelines have been published. To make it a reality might take more effort.

Photo of Catherine ByrneCatherine Byrne (Dublin South Central, Fine Gael)
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I am sorry that the answer has not fully cleared up the issues the Senator raised. I will meet the Minister, Deputy Harris, today and I will raise her concerns with him. I have personal experience of somebody at home who had a child who needed special food and because of the cost it was difficult for them to get it.

Sitting suspended at 11.20 a.m. and resumed at 11.35 a.m.