WORLD HEALTH ORGANIZATION
ORGANISATION MONDIALE DE LA SANTE
REGIONAL OFFICE FOR THE WESTERN PACIFIC BUREAU REGIONAL DU PACIFIQUE OCCIDENTAL
REGIONAL COMMITTEE Forty-seventh session Seoul 9-13 September 1996
WPRlRC47INGO/6 30 September 1996
ORIGINAL: ENGLISH
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STATEMENT BY DR EUN-JOO KIM, REPRESENTATIVE OF THE WORLD FEDERATION OF HEMOPHILIA (WFH) It is an honour and a pleasure to make a speech during this forty-seventh session of the WHO
Regional Committee for the Western Pacific. As you know, haemophilia is a congenital deficiency of coagulation factor VIII or IX. Haemophilia patients suffer from bleeding problems from birth until death. Even though the
prevalence of haemophilia is only one per 5000 to 10000 male births, haemophiliacs are always confronted with the possibility of life-threatening haemorrhage, bleeding-induced sequelae and
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various handicaps. The incidence of bleeding to be treated is much higher than the prevalence. Haemophilia is a genetic disorder so there are many potential patients behind each patient or each female carrier. In addition, the overall cost for the care of haemophiliacs is very high. These are the reasons to concentrate our concerns on this disease. In the care of haemophilia, a comprehensive team approach of medical, social, financial and governmental support is very important. To achieve the common goals of haemophilia care,
communication and cooperation among all countries is also important. The World Federation of Hemophilia (WFH) has worked hard in increasing activities in the priority areas of haemophiliacare, publications, communications and consultation. Our major
priority has been to increase the resources for programmes which improve access to haemophilia care worldwide. But in many developing countries, a lot of haemophiliacs cannot be diagnosed correctly, and factor replacements are not available. The World Federation of Hemophilia is composed of 79 national Member Organizations, with only seven countries coming from the Western Pacific Region namely: Malaysia, New Zealand, Philippines, the Republic of Korea and Singapore. Australia, China,
WPRlRC47INGO/6 page 2
Several developing world programmes have been put in place and supplemented. The first is the Centre Twinning Programme, which allows the experience, skill and resources of well developed haemophilia societies to be of benefit in the development of newer haemophilia societies. The second programme is the haemophilia specialist training for fellowships at the International Haemophilia Training Centres. And third, several pUblications have been distributed to all members of the WFH to educate and to supply members with the updated information. I would like to request the WHO Regional Committee for the Western Pacific to help initiate the activities of haemophilia societies in developing countries. Once the activities of haemophilia societies have been initiated, these societies must be enthusiastic in the development of their situation to achieve their goal of ideal care. But without continuing governmental support in the aspect of policies and finances, the development of haemophilic care cannot be achieved. The Guidelines for the Development of a National Programme for Haemophilia has been produced jointly by WFH and WHO. These guidelines should be of great benefit to countries in persuading their health ministries to put together a cohesive plan for haemophilia care. There are many issues in the management of haemophilia. These include viral safety of coagulation factors, choice of coagulation factors, control of viral hepatitis and AIDS, management of coagulation factor inhibitors, and gene therapy. But the major priority for developing countries is to increase resources for factor replacement therapy, training of haemophilia specialists and twinning programme. For this purpose, I hope that the WHO Regional Committee for the Western Pacific will continue to be concerned about this major genetic disorder, haemophilia, and will cooperate continuously with WFH. Thank you very much. ""'"