Colm Burke (Fine Gael)

My matter relates to the medical condition epidermolysis bullosa, commonly known as EB. It refers to a group of genetic conditions, the central feature of which is extreme fragility of the skin. It is characterised by blisters and wounds on the skin and internal linings following even very minor friction. Children with the condition are often referred to as butterfly children, due to their skin being as fragile as a butterfly's wings. Mild forms of EB result in chronic pain and immobility. Severe forms affect many systems of the body, can be fatal in infancy or result in dramatically reduced life expectancy, and cause patients to live in constant pain. EB is a rare condition affecting an estimated one in every 18,000 babies born.

I thank the Minister of State for coming to the House to deal with this matter. I raise the matter because DEBRA Ireland has been in contact with me. Its members, for a variety of reasons, are concerned about the difficulties experienced by EB patients. For example, EB is not included in the long-term illness scheme. Many families do not qualify for the medical card on financial grounds and must rely on the unpredictable and subjective methods of assessment for qualification on a discretionary basis. When a medical card has been approved for an EB patient, it must be renewed regularly, despite the fact that EB is a lifelong incurable condition. Dressings are not listed as reimbursable items in the general medical or drugs payment schemes. I learned of one case where medication and dressings cost more than €1,000 per month. In many cases, dressings must be acquired through the hardship scheme, which is available only to those who have a medical card. The assessment process for the hardship scheme is, once again, subjective and tenuous as it is dependent on having an understanding and supportive local public health nurse or pharmacist. In addition to these challenges, many non-prescriptive drugs are required by EB patients but are not covered by the State schemes.

I seek a recognition of this condition as a long-term illness for which a medical card should be automatically provided. The difficulties in accessing medication must be streamlined and the obstacles I have outlined removed. The condition affects a small number of people but clinical photographs of patients are frightening and families who must deal with the condition every day find obstacles in the way of accessing the services, medication and support they need. I ask that the matter be considered.