The way in which haemophilia medications are procured in Ireland is now seen as the most effective model in haemophilia care worldwide, the Irish Haemophilia Society has said.

Haemophilia is a group of inherited blood disorders in which there is a life-long defect in the clotting mechanism of the blood. It is usually inherited and is a rare disease - around 400,000 people live with the condition globally including 900 in Ireland. There is no known cure so those affected must learn to live with the condition with the aid of various treatments.

Twenty years ago, the Lindsay Tribunal found that because of contaminated blood products supplied by the state, a total of 106 people with haemophilia were infected with HIV and 255 people were infected with hepatitis C.  To date, 114 of these people have died.

The report led to the establishment of two separate bodies:

-The National Haemophilia Council which is a statutory body established to advise the Minister for Health and HSE on aspects of treatment and care

-The Haemophilia Product Selection and Monitoring Advisory Board

(HPSMAB) which is a non-statutory board that provides expertise and advice on the procurement of the safest and most effective treatments for haemophilia.

Since then, Ireland has been at the forefront in terms of the introduction of the latest and most effective therapies. Furthermore, HPSMAB has saved the country enormous costs in the supply of quality treatment for those living with haemophilia. In 2002, Ireland was paying 26% above the EU average price for haemophilia products. Now, it is paying significantly below the EU average price.

“The significant achievements seen in the organisation of haemophilia care in Ireland have been built on a model of strong collaboration and partnership between the haemophilia treaters, the treatment centres at St James Hospital, Children’s Health Ireland at Crumlin Hospital in Dublin, University Hospitals in Cork and Galway and the Irish Haemophilia Society, with key input and engagement from the Department of Health,” noted the director of the National Coagulation Centre, Prof Niamh O’Connell.

According to Brian O’Mahony, CEO of the Irish Haemophilia Society and a haemophilia B patient, the Haemophilia Society has been  providing training on procurement to doctors, patient organisations and health officials in over 30 countries since 2010.

“Unfortunately, we cannot change the past but we are working hard together with the Minister for Health, the National Haemophilia Council and HPSMAB to ensure haemophilia patients in Ireland have access to world-class treatments.

“We are also actively engaging with other countries to ensure their patients too can have appropriate treatment options. It’s our belief that a similar system of organisation and formal involvement of doctors and the relevant patient organisations in the care and procurement of medications could benefit many other rare or indeed chronic diseases in Ireland,” Mr O’Mahony added.

The success of the procurement model is being highlighted as part of World Haemophilia Week which runs from April 17-22.