22nd Annual European Haemophilia Consortium Conference 2009 was took place in Vilnius on 11-13th of September.
Here are the most important moments, the material is taken from the Conference's official site (http://www.ehc2009.eu/index.php?id=74):
„The objective of the conference is to exchange information, learn about the news and explain away how patient organizations are doing and what we could do for assistance among ourselves", - the aim of the meeting was defined by Mr. Ad C. Veldhuizen, the president of the European Haemophilia Consortium (EHC). The conference was attended by more than 260 representatives from Europe - the leaders of haemophilia patient organizations, medical specialists, the representatives of governmental institutions.
Mrs. Nora Ribokienė, the vice-minister of health, welcomed the conference attendees and pronounced the opening speech. Ms. Neringa Gailiūtė, a doctor of Haemophilia Centre of Klaipėda Seamen‘s Hospital gave a presentation on the situation of haemophilia patients in Lithuania. Recently there are 146 patients in Lithuania diagnosed with haemophilia, 51 children among them. During the last 20 years the situation of haemophilia patients has changed considerably - up to 1990, the patients were mostly treated by direct blood transfusion after bursts of bleeding, and now - with concentrates of blood coagulation factor. However, compared to other European countries as regards the availability of medications, Lithuania is lagging behind nearly 3 times. The results of such treatment could be apparently observed among the attendees of the conference, i.e. the majority of haemophilia patients from Lithuania and other countries of the Eastern Europe are limping, their joints being affected by internal bleeding. The situation of haemophilia patients from other European countries giving more attention to haemophilia is far better.
Therefore one of the key conference subjects was preventive treatment of haemophilia patients. Such treatment is rather expensive (haemophilia is among other ten diseases which require the most expensive treatment), but the result is obvious - people who can lead normal life and be able to work. In most countries within the European Union, the prophylactic treatment is applied to children haemophilia patients. The results of such treatment was illustrated by photos: playing children - healthy ones and haemophilia patients - but in fact it‘s impossible to distinguish between healthy and sick kids. Since 2008, the program of prophylactic treatment for all children was started in Poland. According to Bogdan Gajewski, the representative of haemophilia patients of Poland, they wrote 400 letters per year to national and governmental institutions and journalists in order to attain their goal.
„The representatives of haemophilia patient organizations must lead negotiations with their governments for bigger sponsorship as concerns prophylactic treatment and treatment with recombinant blood coagulation factors. The key reasons in such negotiations involve: the greater investments into treatment mean lower investments into expensive joint surgeries, sickness benefits for disabled, etc. in the future", - Mr. Ad C. Veldhuizen, the president of EHC, advised.
The second important subject at the conference was evaluation of economical and health technologies. By giving corresponding statistical data, Mr. Brian O‘Mahony, the former president of EHC, has proved that investments into treatment of haemophilia patients is worth while indeed. For the meantime, such research has not been carried out in Lithuania.
„We believe that this event will assist in catching the attention on the situation of haemophilia patients in Lithuania and will expedite problem solving - applying of prophylactic treatment to children; treatment of children and adult haemophilia patients with recombinant coagulation factors after hepatitis C and B cure, to ensure conditions for adult haemophilia patients for compensated in-patient rehabilitation", - Mr. Marius Pigulevičius, the president of the Association of Haemophilia Patients of Lithuania, said.
For me, who come from a country, where the factor supply is under 0,3 UI/capita, it was quite a big ,,stroke" that there were discutions about the adult profilaxia, and we don't have even on demand treatment.
The conference was organized by the European Haemophilia Consortium, in collaboration with the Association of Haemophilia Patients of Lithuania.
Vilnius is beautiful. Here is a short presentation about Lithuania:
http://www.vilnius-convention.lt/index.php/en/61692/
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