National haemophilia programme development in the Republic of Georgia

After the dissolution of Soviet Union in 1991, haemophilia care in the Republic of Georgia was negatively affected because of the expense of treatment products, lack of clinical and diagnostic facilities, and the need for trained personnel throughout the country. In 2001, the Georgian Government, working through the Ministry of Health, in collaboration with Georgian Association of Haemophilia and Donors, the Institute of Haematology and Transfusion, and the World Federation of Haemophilia, initiated a National Haemophilia Programme. As part of this programme the first Georgian Haemophilia Treatment Centre (HTC) was established. In this paper, we will describe (i) our outreach efforts to identify patients with haemophilia (PWH), (ii) the diagnostic and clinical services provided to patients by the HTC, and (iii) the results of a patient survey designed to assess patient satisfaction with the care provided. Total of 216 PWH were diagnosed, mean age was 25 years (range 4 months to 75 years); 43% had severe, 33% had moderate and 24% had mild haemophilia A or B. Overall, 183 (85%) had haemophilia A and 33 (15%) had haemophilia B, giving a ratio of 5.6. During the 2-year period, 77% of the expected number of PWH was identified by our outreach programme. Vast majority had comprehensive evaluation including joint assessment and over 60% were tested for blood-borne infections within a year and half period. Our findings showed that haemophilia care was considerably improved since the beginning of the National Haemophilia Programme and the survey of PWH showed a high degree of satisfaction with services provided in the HTC. In conclusion, close collaboration of the government, non-government entities and medical professionals in a Georgian national haemophilia care model; resulted in the successful delivery of the much needed services and care to the people living in Georgia with haemophilia.