RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia Activity of the Russian Hemophilia Society in the Healthcare System Reform in Russia Yuri Zhulyov President Russian Hemophilia Society

RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia Russian Federation Population – 142 million

Russian Hemophilia Society  founded in 2000 (though first hemophilia organization in Russia founded in 1989)  61 regional chapters RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia

Reasons for creation of RHS  Centralization of authority in Russia  Large power of the federal authorities  Wish of regional patients’ groups to create a national organization  Recommendations from WFH RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia

Difficulties at the creation of RHS  Disconnection of persons with hemophilia  Lack of information in Moscow about potential regional active volunteers  Poor financial and technical abilities  Very difficult process of registration of national public organizations in the Ministry of Justice RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia

From beginning we defined three tasks as the main mission of our organization: assistance in improving medical care for PWH; social support for PWH and their families; information and education for PWH, their families and professionals. RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia

Russian Hemophilia Society  represents interests of regional chapters at federal authorities  assists regional chapters in implementing federal programs of treatment and rehabilitation of PWH  offers communication programs (web-site, publications, workshops)  strengthens interregional contacts  assists and coordinates activities of the regional chapters  broadens international contacts and cooperation RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia

Before 2005 RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia  Federal level: funding was provided by the Ministry of Health. Preparations were for specialized treatment (for surgery mainly) in Federal HTCs of Moscow, St-Petersburg, Kirov, Barnaul.  Local level: routine treatment for PWH. Funding was provided from regional budgets of 88 regions of Russia.

Nowadays  Federal budget pays for factor supply for PWH and for specialized treatment (for surgery mainly) in federal HTCs  Local budgets pay for treatment at regional hospitals RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia

Lobbying  Regular contacts with federal authorities and informing them about the need to purchase factor concentrates.  Methods: meetings, official letters, letters from patients, letters of different groups and organizations, lobbying of deputies of federal and local parliaments RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia

Results of lobbying activities For the first time in Russia, a person with hemophilia has an opportunity to receive factor concentrates for home treatment. RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia

Agreement with the authorities RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia  On 20 May 2005, the RHS concluded an agreement with the Federal Service of Health Care Control and Social Development on the public monitoring of the implementation of all hemophilia care reforms.

The goals of the agreement RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia  Creation of the Ministry of Health national registry of patients with hemophilia and other inherited bleeding disorders  Specification of regions’ requirements for factor concentrates  Information for the experts and patients on the mechanism of the federal reform implementation  Analysis of results and data of hemophilia care monitoring

Registry of PWH RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia  There are 7374 persons with inherited bleeding disorders in Russia  Average life expectancy of persons with hemophilia in Russia – 33 years (38 in Moscow)

Registry of PWH RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia

Registry of PWH The Federal Service of Health Care Control and Social Development, based on the data received from local health authorities, organized the registry of persons with hemophilia including monthly factor concentrates demand per patient The registry should be updated annually on September 1st. The Federal Service of Health Care Control and Social Development appoints persons at the local health authorities. These persons are responsible for the supply of factor to PWH.

National standards of hemophilia treatment RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia

Structure of standard hemophilia treatment RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia I. Area of implementation II. Legal reference III. Generalities IV. Implementation of standards V. General issues VI. Characteristics of requirements: 6.1. Patient's model – primary diagnostics 6.2. Patient's model – prophylaxis 6.3. Patient's model – hemorrhages of different body locations 6.4. Patient's model – condition requiring hospitalization 6.5. Patient's model – hemorrhages of different body locations (inhibitors to factors VIII/IX) 6.6. Patient's model – condition requiring hospitalization (inhibitors to factors VIII/IX)

By the end of 2007 among persons with hemophilia was mailed the special questionnaire. This work helps better understanding the quality of treatment for persons with hemophilia in Russian Federation. It is carried out together with Russian Society for Pharmacoeconomics and with support of Federal service of supervision in Health Care and Social Development. RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia

Preliminary analysis of questionnaires of persons with hemophilia at April 4, 2008 Questionnaires sent total – 6309 Blank (patient left, died, denied to participate) questionnaires returned total – 298 Questionnaires monitored total – 356 Questionnaires excluded (incomplete data) – 32 Questionnaires analyzed total – 324 RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia

RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia General patients’ characteristics Age range 4-89 years Mean age 32 years Adults – 262 (80,8%), children – 61 (18,8%), 1 person’s age unknown Study – 111 (34,2%), work – 118 (36,4%), neither work nor study 94 (29%) 125 persons have relatives with hemophilia (38,5%), do not have (60,4%), no data on 3 persons

RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia Distribution according to diagnoses FVIII deficiency (hemophilia A) – 252 (77,7%) FIX deficiency (hemophilia B) – 47 (14,5%) Von Willebrand disease – 22 (6,7%) Other bleeding disorders – 3 (0,6%)

RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia FVIII and FIX levels in 299 patients Level

RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia Number of bleeding episodes in patients

RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia Frequency of factor injections a month Total number of injections (of 289 patients) – 1827 Average – 6,3 a person

RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia Ways of factor obtainingNumber of patients From a district doctor 7 From a hematologist 30 In a pharmacy 242 In a hospital 14 Other way 3 From a hematologist and in a pharmacy 9 From a hematologist and in a hospital 0 4 Did not obtain 4 From a district doctor and in a pharmacy 2 Embarrassed to answer 3 Unknown (probably did not obtain) 37 Ways of factor obtaining

Number of hospitalizations during the last month Total number of hospitalizations (of 324 patients) – 47 Average – 0,1 a person RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia

RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia Methods of injectionsNumber of patients Without assistance (or with relatives’ assistance) 192 In outpatients' clinic (by a nurse) 77 By an emergency care 29 In a hospital 38 Without assistance (or with relatives’ assistance) and in outpatients' clinic (by a nurse) 14 Without assistance (or with relatives’ assistance) and by an emergency care 5 Without assistance (or with relatives’ assistance) and in a hospital 7 In outpatients' clinic (by a nurse) and by an emergency care 10 In outpatients' clinic (by a nurse) and in a hospital 5 Emergency care and in a hospital 1 Unknown 35 Methods of injections

RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia ProductNumber of patients Agemfil A 5 Agemfil B 5 Aimafix ® 2 Willate ® 0 Hemactin STD ® 76 Hemophil M ® 14 Immunate ® 39 Immunine ® 19 Kogenate FS ® 0 Koate DVI ® 16 Recombinate ® 4 Octanine-F ® 16 Octanine ® 5 Octanate ® 90 Emoclot ® 4 Unknown 42 Patients receive the following products

RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia Patients receive the following products ProductNumber of patients NovoSeven ® 5 Cryoprcipitate 5 Fresh frozen plasma 2 FEIBA ® 0 Clotting factors complex 76 DDAVP 14 Local haemostatics 39 Unknown 42

Quality of life rate - movement RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia

Quality of life rate – self-service RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia

Quality of life rate – everyday activity RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia

Quality of life rate – pain and discomfort RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia

Quality of life rate – anxiety and depression RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia

Quality of life as compared with the last year RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia

Hepatitis – 96 patients (29,6%) Musculo-skeletal disorders – 50 patients (15,4%) Concomitant disorders connected to the main disease

Total factor VIII concentrate supply in Russia, millions IU RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia

Factor VIII concentrate supply in Russia, IU per capita RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia

Further development of social program in Russia  Creation of the Ministry of Health national registry of patients with hemophilia and other inherited bleeding disorders.  Implementation of national standards and protocols for hemophilia treatment.  Education of hemophilia specialists, persons with hemophilia and members of their families. RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia

Further development of social program in Russia  Inclusion of people with hemophilia in the federal program not on the basis of the status of disabled person, and on the basis of the diagnosis - hereditary coagulopaty. Definition of the hemophilia budget within the framework of the social program and its protection. Maintenance of regional clinics with clotting factors concentrates. RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia

Russian Hemophilia Society Moscow, Noviy Zykovskiy pr., 4-А tel./fax: +7(495) , +7(495)