John Perry (Sligo-North Leitrim, Fine Gael) | Oireachtas source

I am taking this Adjournment matter on behalf of the Minister for Health who told me personally that he regrets being unable to be here this evening. I thank Senator Crown for raising the issue of vasculitis, in its many forms, and for the opportunity to outline the approach which the Department of Health is taking to address these and rare diseases in general.

Vasculitis is a general term that describes blood vessel inflammation. As Senator Crown has alluded to, it can be caused by a large number of conditions including cancer, rare inflammatory diseases, infections and adverse drug reactions. Treatment of vasculitis depends on the organs involved and it can be mild or life threatening. Treatments often involve medication to reduce the inflammation. A number of specialty services provide treatment, including nephrology, rheumatology, otolaryngology, paediatrics, ophthalmology, neurology and respiratory care. As primary and secondary forms of vasculitis manifest across so many specialties, it is a condition that neither fits neatly into a single national clinical programme nor into a single care setting because its treatment may require either or both acute specialist care and primary care.

In regard to rare diseases, an EU Council decision of 8 June 2009 estimated that there are between 5,000 and 8,000 rare diseases. It defined the specificities of rare diseases as a limited number of patients and a scarcity of relevant knowledge and expertise. The Council's decision recognised these specificities when it recommended that member states adopt a plan to guide actions in the general field of rare diseases. It is with this in mind that the Department of Health is finalising a generic plan to apply to the 8,000 rare diseases estimated to exist. This plan is being prepared for publication at the earliest opportunity and its recommendations refer, among others, to the following areas: information systems and registers for rare diseases; rare disease research and access to clinical trials for patients with rare diseases; prevention of rare diseases through healthy lifestyles and nutritional supplements as appropriate; access to diagnostic services and how this could be improved; a national clinical programme for rare diseases, to include an office for rare diseases which will support the HSE in the development of appropriate treatment programmes, accessing relevant clinical trials, designation of centres of expertise and provision of information for patients; development of criteria for the reimbursement of orphan medicinal products and technologies; patient empowerment and the support of patient organisations; establishment of monitoring and reporting mechanisms to be defined within the rare disease plan; and activities such as the mapping of current resources on rare diseases, potential designation of centres of expertise and the establishment of monitoring and reporting mechanisms which will take account of the reporting requirements under the national service plan, the EU key performance indicators relating to rare diseases, the requirement to participate in European reference networks and the cross-border health care directive.

At this juncture, the HSE has established a national clinical programme for rare diseases. A national clinical lead has been appointed and a programme manager is in place. Part of their work will address care pathways for patients with rare diseases and will link with the other specialist clinical programmes.