Volume 2, July 2006 - EHC

Volume 2, July 2006Haemophilia Day Symposium in Romaniaon May 12th 2006On May 12th,A Haemophilia Symposium was heldin the Houses of Parliament in Bucharest,Romania.This impressive building was host to a meeting ofmore than 100 people with haemophilia, parents,doctors and health officials. The meeting washosted by Professor. Dr. Dan Sabau who isPresident of the Health Commisssion of theRomanian Senate. Among the speakers were Dr.Margit Serban and Daniel Lighezan, from theRomanian Haemophilia Society Hubert Hartl,Chairman of the EHC, Franticzek Vondrskya fromthe Czech Haemophilia Society and Brian OMahony.While the symposium itself was very well attendedand was undoubtedly a success,the eventsorganised for the parliament prior to the symposiumwere equally important. That morning,prior to the symposium, a meeting took placewith Professor Sabau from the HealthCommission of the Romanian Senate and with hiscolleagues. In attendance were health officialsfrom the Romanian Ministry for Health andGabriele Tamandl, who is a member of theAustrian parliament. Austria of course enjoys aclose political relationship with Romania. Also inattendance was Dr. Dan Gabriele Popa from thecommittee for Health, Ecology and Sport of theRomanian Parliament and representatives of theRomanian Health Insurance Fund. (CNAS)During the course of this meeting the importanceof having a National Haemophilia Programme,improved comprehensive care for persons withhaemophilia and related bleeding disorders andimproved access to Factor Replacement Therapywere discussed. Very positive indications werereceived from the health committee that theaccess to replacement therapy for people withhaemophilia will be substantially increased overthe coming year. Among the areas which werestressed were the importance of organisation ofhaemophilia care and the fact that even with alimited increase in the budget for nationalhaemophilia care, if this is properly allocated ,there can be real and dramatic improvements inthe quality of care in the country. The importanceof having a national budget for ReplacementTherapy and National Treatment Protocols wasalso discussed and I believe understood by themembers of the health committee.Since Romania is now a candidate country for EUmembership and will enter the EU during 2007. Ibelieve that the health committee understoodthe importance of reaching European minimumlevels of treatment for persons with haemophilia.Following this very positive meeting with theHealth Commission, a Press Conference was held.The meeting with the Health Commission, thePress Conference and the well-attended symposiumprovided an opportunity to increase theprofile of haemophilia with the government andhealth officials, to increase the profile ofhaemophilia with the media and gave an opportunityto persons with haemophilia and theirfamilies to attend the symposium updating themin various aspects of haemophilia.It was an important event which I hope in thefuture will be seen to mark the beginning of areal and sustainable improvement in care for personswith haemophilia in Romania.Brian O Mahony19