Regina Doherty (Meath East, Fine Gael)

This Bill will allow St. James's Hospital, at which the national haemophilia centre is based, to procure and supply the national stocks of clotting factor concentrate products used in the treatment of haemophilia and other clotting factor disorders. The new arrangements will result in a more streamlined system of procurement for the products and will also achieve significant financial savings for the health budget in their purchase.

There are approximately 600 patients with classic haemophilia type A and B in Ireland, with a further 900 patients with Von Willebrand's disease and a couple of hundred patients with other similar rare blood disorders. The Department of Health, the HSE, the IBTS and St. James's Hospital all agree that this function should be transferred from the IBTS to St James's Hospital. Crucially, the Irish Haemophilia Society is also supportive of this change. Administrative arrangements have been made to prepare for the change in the expectation that the legislation can be enacted quickly.

The level and quality of the outpatient services delivered from the national haemophilia centre is as good as can be found anywhere in the world. The centre is a model for the outpatient management of any chronic disease. It offers a service to patients with a wide range of bleeding and clotting disorders on an inpatient and outpatient basis, from investigation and diagnosis to long-term management of severe coagulation disorders. It also provides comprehensive care with a multidisciplinary approach involving nursing, physiotherapy, social work, counselling and dentistry.

There have been a significant number of developments in the care of haemophilia patients since the dark days of the 1980s and the blood infection scandals which resulted in the Lindsay tribunal. The subsequent report made a number of recommendations about improving the medical care of haemophiliacs and making it more patient centred. The National Haemophilia Council was set up in 2004 on foot of the tribunal's recommendations. Its membership includes representatives from the Irish Haemophilia Society, the HSE, the Department of Health and relevant medical personnel.

Health services for haemophilia patients have a chequered past in Ireland but services have dramatically improved, including the major new haemophilia health centre which the Minister opened in Cork last year and the new inpatient centre for Dublin.

The chairperson of the National Haemophilia Council, Professor John Bonnar, recently stated:

The problem at the coalface is we are dealing with a condition that is rare and a patient could present at an emergency unit, which will likely be very busy, but patients with haemophilia have to get treatment as fast as possible so there has to be a system [for that], and clearly that is being recognised, but a large number of doctors may never have come across a haemophiliac.

With this Bill, and the subsequent new arrangements, haemophiliacs can bank on improved services.

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