Advocacy

The Irish Haemophilia Society advocates for optimum provision of healthcare for all people with haemophilia and related bleeding disorders. We make recommendations to the Department of Health (DOH) and to the Health Service Executive (HSE) through the formal statutory bodies: the National Haemophilia Council (NHC) and the Consultative Council on Hepatitis C. We are also involved in the selection of factor concentrates through our role on the Haemophilia Product Selection Monitoring Advisory Board (HPSMAB). We are involved in the development of policy for haemophilia on a European and global level through our participation in the European Haemophilia Consortium (EHC) and the World Federation of Hemophilia (WFH). This external work also ensures that we are up to date on any key developments in relation to haemophilia care worldwide.

We work closely with the haemophilia care teams at the comprehensive care centres in St. James’s Hospital, Our Lady’s Children’s Hospital Crumlin and Cork University Hospital. We regularly meet with the teams at the comprehensive care centres to discuss issues of mutual concern and to ensure that we can work in a cooperative and mutually beneficial way in providing the best treatment, services and support for a person with haemophilia and related bleeding disorders.

Our goal is to have an educated and informed population of people with haemophilia who are well equipped to deal with this life-long condition. We brief health spokespersons, politicians and the media as required, in relation to developments in haemophilia and related bleeding disorders. We have a long track record of active advocacy with the political system and with the media. We actively lobby for the provision of the safest and most effective replacement therapy, compensation, and health care for members who were infected with Hepatitis C and/or HIV through the provision of unsafe blood and blood products in the past. We continue to advocate for safe and effective therapy. We continue to be vigilant about new threats to replacement therapy such as the threat of vCJD. We have been active in the policy response of the haemophilia treatment centres on a national basis to the implications of vCJD for people with haemophilia.

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