Haemophilia – Awareness and disparity of care in the EU

Article type: Research Article

Authors: Hartl, Hubert K. | Vanovertveld, Peter | Secq, Edmond | Lehoux, Jean-Pierre | Lighezan, Daniel | Böhm, Gabriela

Affiliations: European Haemophilia Consortium, Vienna, Austria | Interel BE, Brussels, Belgium

Note: [] Corresponding author: Dr. Hubert K. Hartl, Institute for Social Medicine, Center for Public Health, Medical University of Vienna, Rooseveltplatz 3, A-1090 Vienna, Austria. Tel.: +43 676 530 3500; Fax: +43 1 713 4404 1789; E-mail: [email protected]

Abstract: Haemophilia is a hereditary bleeding disorder, which mainly causes bleedings into joints and muscles as well as – untreated – premature death from intestinal or cerebral bleeding in affected patients. The treatment of Haemophilia is the intravenous injection of the missing or decreased coagulation factor (VIII or IX) to achieve sufficient blood coagulation to stop bleeds and to prevent secondary haemorrhage. A person suffering from haemophilia does not bleed faster than anyone else, but bleeding lasts longer. Persons with Haemophilia (PwH) can bleed internally or externally. Severely affected individuals experience spontaneous bleeds an average of 35 times a year [1]. Non- viral- inactivated- concentrates caused a pandemic of HIV/ Aids and HCV (Table 1) within this population in the 1970ies and late 1980ies. In this time the public and political awareness concerning this group of patients was rather high, as the iatrogenic infections caused numerous lawsuits and negotiations between patient organisations, pharmaceutical industry and national governments/health care providers, insurances, etc. Today plasma derived as well as genetically engineered clotting factor concentrates are available, safe and efficacious, strict legislation on blood safety became standard in most countries. Whilst the care provided for patients with Haemophilia in some EU Member States can today be sited globally as examples of best practice, there are still definite disparities between the levels and quality of care available to PwH in the European Union. Between April and July 2005, the European Haemophilia Consortium (EHC) carried out a series of interviews among EU policy-makers with the aim of establishing the level of understanding and awareness of haemophilia that exists amongst EU policy makers. The responses were treated anonymously, so no explicit reference is made in this report to the individual answers given by interview partners.

Journal: Pharmaceuticals, Policy and Law, vol. 8, no. 0, pp. 89-102, 2005,2006