Róisín Shortall (Dublin North West, Labour)

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.