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 Federation

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

Russian Hemophilia Society

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founded in 2000 (though first hemophilia organization in Russia founded in 1989)

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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

 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.

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

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

 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.

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

The goals of the agreement

    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

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

Registry of PWH

 There are 7374 persons with inherited bleeding disorders in Russia  Average life expectancy of persons with hemophilia in Russia – 33 years (38 in Moscow)

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

Registry of PWH

1205 930 676 4563 Hemophilia A Hemophilia B vWD Other bleeding disorders 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

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)

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

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

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%), 196 - 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 – a person

6,3 RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia

Ways of factor obtaining

Ways of factor obtaining

From a district doctor From a hematologist In a pharmacy In a hospital Other way From a hematologist and in a pharmacy From a hematologist and in a hospital From a hematologist and in a hospital Did not obtain From a district doctor and in a pharmacy Embarrassed to answer Unknown (probably did not obtain)

Number of patients

7 30 242 14 3 9 0 4 4 2 3 37

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

Total number of hospitalizations (of 324 patients) –

47

Average – a person

0,1

Number of hospitalizations during the last month

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

Methods of injections

Methods of injections

Without assistance (or with relatives’ assistance) In outpatients' clinic (by a nurse) By an emergency care In a hospital Without assistance (or with and by an emergency care relatives’ assistance) and in outpatients' clinic (by a nurse) Without assistance (or with relatives’ assistance) Without assistance (or with and in a hospital relatives’ assistance) In outpatients' clinic (by a nurse) and by an emergency care In outpatients' clinic (by a nurse) and in a hospital Emergency care and in a hospital Unknown

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

192 77 29 38 14 5 7 10 5 1 35

Patients receive the following products

Number of patients Product

Agemfil A 5 Agemfil B Aimafix ® Willate ® Hemactin STD ® Hemophil M ® Immunate ® Immunine ® Kogenate FS ® Koate DVI ® Recombinate ® Octanine-F ® 76 14 39 19 0 16 5 2 0 4 16 Octanine ® 5 Octanate ® 90 Emoclot ® 4 Unknown 42

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

Patients receive the following products

Product

NovoSeven ® Cryoprcipitate Fresh frozen plasma FEIBA ® Clotting factors complex DDAVP Local haemostatics Unknown

Number of patients

5 5 2 0 76 14 39 42

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

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

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

Total factor VIII concentrate supply in Russia, millions IU

500 454 450 400 350 300 250 231 230 200 150 115 100 50 0 9,2 13,96 21 30 31 32 8 9,5 5,73 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia

Factor VIII concentrate supply in Russia, IU per capita

3,5 3,2 3 2,5 2 1,63 1,6 1,5 1 0,788 0,5 0 0,054 0,065 0,039 0,063 0,095 0,144 0,205 0,212 0,219 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia

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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

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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

• 125167 Moscow, Noviy Zykovskiy pr., 4-А • tel./fax: +7(495) 612-3884, +7(495) 612-2053 • E-mail: [email protected]

• http://www.hemophilia.ru