John Crown (Independent)
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The topic before us may seem arcane but it is actually very important. Vasculitis is an overall term for a group of life threatening diseases characterised by widespread inflammation of blood vessels, often throughout the body. Inflammation of these blood vessels may lead to blockage or rupture of the vessels, death or bleeding in the affected organs and catastrophic consequences for the health and, sadly in many cases, the lives of affected patients. Early diagnosis and effective treatment is critical in preventing death, organ failure and disability. While highly effective treatments are available, patients may deteriorate rapidly, often within months or even weeks, unless effective therapy is commenced.

How common is this problem? There are more than 15 types of primary vasculitis, which is defined as vasculitis for which there is no known precipitating cause. There are also many forms of secondary vasculitis relating to illnesses with which Senators will be familiar. While individually many of these diseases are rare or, in some cases, exceedingly rare, collectively the entity of vasculitis is relatively common. It affects a significant number of patients, with estimates that more than 50,000 citizens on the island of Ireland will experience vasculitis at some point in their lives. Due to the widespread nature of the inflammation in vasculitis, affected patients may present with symptoms to a variety of doctors, including eye doctors, ENT specialists, skin specialists and gut specialists. As individual forms of vasculitis are rare, the diagnosis may not be recognised even by a competent physician.

In early stages, doctors may not be familiar with the fact that certain symptoms are due to vasculitis. As a result, delays in diagnosis and, indeed, misdiagnoses are common even in good and competent hands, potentially leading to inadequate or inappropriate treatment. This clearly increases the risk of disease and treatment-related complications.

Current European guidelines recommend that patients with suspected vasculitis should be evaluated in a centre of excellence. Failure to diagnose and treat the disease appropriately not only has significant health consequences for patients but also significant economic consequences. A case in point is kidney disease. Many patients with vasculitis will develop kidney disease, which if treated early can be prevented from developing into chronic kidney illness. If, however, the diagnosis is missed or the treatment is delayed, these patients may develop chronic renal failure with the result that they require renal replacement therapy either through dialysis or transplant. We are all aware of the personal and societal health and economic costs of dealing with kidney failure.

It is proposed that a system of centres of excellence be developed throughout the island of Ireland. This would accord with European guidelines and EU recommendations for the management of rare diseases, as well as being consistent with the national rare disease plan for this Republic. A network of specialist clinics to diagnose and manage patients with vasculitis is required to provide streamlined rapid access for patients with suspected vasculitis to an appropriately resourced clinic where prompt diagnosis and judicious treatment, potentially without the need for hospitalisation, may prevent complications and reduce health care costs. The HSE should also attempt to increase awareness and educational activities in this area. There should be one specialist clinic in each of the newly-defined hospital groups, which would be staffed by an appropriate array of medical specialists and supported by clinical nurse specialists. There should be rapid access to outpatient diagnostics to keep people out of hospital and enable them to get the appropriate treatment that saves their health and the health system's money. There should be access to appropriate therapy, disease registries and international collaboration. It is essential that a high priority be given to setting up this network, which offers huge cost savings as well as considerable benefits for the health of individual patients.

I will bore the House for one more minute by outlining some of the conditions that can cause secondary vasculitis. Many of the primary disease are rare, such as giant-cell arthritis and polyarthritis nodosa, but some of the disease that are secondary causes of vasculitis will be familiar to the House, such as rheumatoid arthritis, lupus, inflammatory bowel diseases and sarcoid ulcers. These disease are relatively common in Ireland. I hope action will be taken on providing more appropriate treatment of these conditions.

John Perry (Sligo-North Leitrim, Fine Gael)
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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.

John Crown (Independent)
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I thank the Minister of State and his officials for the research that went into his reply and I await further developments in the area of rare diseases. I wish to state that vasculitis illnesses are not particularly rare when taken as a collective. There is a good imperative for giving priority to getting the specialist designation for centres of excellence within the hospital groups and to put in the resources which will enable patients to go through the system quickly for the benefit of their own lives and health as well as for the benefit of their families. We must remember that these patients, who require serious levels of medical care as a result of the disability caused by this illness, may also bring one or two family carers with them. It is good and humane medicine and social practice to get these systems up and running. It also makes good business sense.

John Perry (Sligo-North Leitrim, Fine Gael)
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I acknowledge the expertise of Senator Crown in this area and assure him that the Minister for Health will take full account of the issue he has raised. As stated earlier, the HSE has established a national clinical programme for rare diseases and a national clinical lead has been appointed. I suggest that the aforementioned appointee should speak to Senator Crown about specialisation within the hospital network, particularly in the context of the effects of vasculitis diseases on so many different areas of health. This must be addressed through the centres of excellence to which Senator Crown alluded.