Colm Burke (Fine Gael)
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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.

Róisín Shortall (Dublin North West, Labour)
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I thank Senator Burke for raising this matter on the Adjournment.

The long-term illness scheme is a non-means tested scheme. It provides free medicines and medical appliances to people with 15 specified conditions. There are no plans to extend the list of conditions covered by the scheme.

People who cannot, without undue hardship, arrange for the provision of medical services for themselves and their dependants may be entitled to a medical card. In the assessment process, the HSE can take into account medical costs incurred by an individual or a family. Those who are not eligible for a medical card may still be able to avail of a GP visit card, which covers the cost of general practice consultation.

Non-medical card holders and people whose illness is not covered by the long-term illness scheme can use the drugs payment scheme. Under this scheme no individual or family pays more than €132 per calendar month towards the cost of approved prescribed medicines. The scheme significantly reduces the cost burden for families and individuals incurring ongoing expenditure on medicines. In addition, non-reimbursed medical expenses can be offset against tax.

Rare diseases are those which affect fewer than one in 2,000 people. Between 5,000 and 8,000 rare diseases have been described, affecting about 6% to 8% of the population in the course of their lives. Many of these conditions are complex, severe and debilitating. Epidermolysis bullosa is a rare disease.

Ireland has been supportive of the EU proposals on rare diseases. Countries are recommended to develop plans or strategies, preferably by the end of 2013. We are now well advanced in developing this work in Ireland. In April 2011, the Minister for Health established a national steering group to develop a policy framework for the prevention, detection and treatment of rare diseases. The national steering group identified a number of areas relating to rare diseases which it is currently considering, including centres of expertise, access to appropriate medication and technology, orphan drug development, research and information and patient empowerment and support.

An integral part of an effective policy framework will be the development of a dedicated HSE clinical programme. A proposal has been submitted to the HSE to establish a national clinical programme for rare diseases. The HSE has agreed to establish such a programme, the details of which remain to be worked through. In addition the steering group is planning to consult patients and key stakeholders in early summer on the broad proposals and recommendations that will emerge. It is expected that the steering group will submit a plan to the Minister for Health during the latter half of this year. I thank Senator Burke for raising this matter.

Colm Burke (Fine Gael)
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My information is that one in 18,000 babies born is affected by this disease. At present, 88 patients are attending the two specialist EB clinics in Our Lady's Children's Hospital in Crumlin and St. James's Hospital. The number of people affected is extremely small. All I ask is that EB be classified as a long-term illness. There is no cure for the disease; it is there for life. Serious consideration should be given to including EB in the long-term illness programme.

I was given the example of a family in Swords who have two girls, aged three and eight, and who have had to surmount all the obstacles I listed to get medical cards and to put support systems in place. It is quite difficult for parents to deal with that. First, they must deal with the knowledge that their children have a long-term illness that will not go away. Second, they must deal with the condition day to day.

I ask the Minister of State to consider what I ask. It is not a huge demand. The number of people affected is small. The one in 18,000 figure translates as approximately five babies being born with the condition every year in Ireland. We should give serious consideration to this matter and I ask that this be done.

Róisín Shortall (Dublin North West, Labour)
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I appreciate where the Senator is coming from and I appreciate the challenges the diagnosis of a rare disease poses for an individual and his or her family. I do not believe the long-term illness scheme is the appropriate way to address some of these issues. The long-term illness, LTI, scheme relates to 15 particular chronic illnesses that affect significant cohorts of the population. The intention was to relieve the cost of the additional medication associated with those conditions. The appropriate way to address rare diseases is through the clinical programme, as outlined in the reply, and also in terms of the steering group which is due to report to the Minister. I do not say for a moment that we do not recognise the difficulties associated with rare diseases, but action is under way to address them in a way that is specific to the rare condition itself.