RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia Activity of the Russian Activity of the Russian Hemophilia Society in the Hemophilia Society in the Healthcare System Reform Healthcare System Reform in Russia in Russia Yuri Zhulyov President Russian Hemophilia Society
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RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia Activity of the Russian Hemophilia Society in the Healthcare.
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RUSSIAN HEMOPHILIA SOCIETYNational member organization of the World Federation of Hemophilia
Activity of the Russian Activity of the Russian Hemophilia Society in the Hemophilia Society in the
Healthcare System Reform in Healthcare System Reform in Russia Russia
Yuri ZhulyovPresidentRussian Hemophilia Society
RUSSIAN HEMOPHILIA SOCIETYNational member organization of the World Federation of Hemophilia
Russian Russian FederationFederationPopulation – 142 million
Russian Hemophilia SocietyRussian Hemophilia Society
founded in 2000 (though first founded in 2000 (though first hemophilia organization in Russia hemophilia organization in Russia founded in 1989)founded in 1989)
6161 regional chapters regional chapters
RUSSIAN HEMOPHILIA SOCIETYNational member organization of the World Federation of Hemophilia
Reasons for creation of RHS 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 SOCIETYNational member organization of the World Federation of Hemophilia
Difficulties at the creation of Difficulties at the creation of RHSRHS
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 SOCIETYNational member organization of the World Federation of Hemophilia
From beginning we defined three From beginning we defined three tasks as the main mission of our tasks as the main mission of our
organization: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 SOCIETYNational member organization of the World Federation of Hemophilia
Russian Hemophilia SocietyRussian Hemophilia Society
represents interests of regional chapters at federal represents interests of regional chapters at federal authoritiesauthorities
assists regional chapters in implementing federal assists regional chapters in implementing federal programs of treatment and rehabilitation of PWHprograms of treatment and rehabilitation of PWH
offers communication programs (web-site, offers communication programs (web-site, publications, workshops)publications, workshops)
strengthens interregional contactsstrengthens interregional contacts assists and coordinates activities of the regional assists and coordinates activities of the regional
chapterschapters broadens international contacts and cooperationbroadens international contacts and cooperation
RUSSIAN HEMOPHILIA SOCIETYNational member organization of the World Federation of Hemophilia
Before 2005
RUSSIAN HEMOPHILIA SOCIETYNational member organization of the World Federation of Hemophilia
FederalFederal level:level: funding was provided by the funding was provided by the Ministry of HealthMinistry of Health. . Preparations were for Preparations were for specialized treatmentspecialized treatment ( (for surgery mainly)for surgery mainly) in in Federal HTCs of MoscowFederal HTCs of Moscow, , St-PetersburgSt-Petersburg, , KirovKirov, , Barnaul.Barnaul.
LocalLocal level:level: routine treatment for PWHroutine treatment for PWH. . Funding wasFunding was provided fromprovided from regional regional budgets of 88 regions of Russiabudgets of 88 regions of Russia..
NowadaysNowadays
Federal budget pays for factor supply for Federal budget pays for factor supply for PWH PWH andand for specialized treatmentfor specialized treatment ( (for for surgery mainly)surgery mainly) in federal HTCs in federal HTCs
Local budgets pay for treatment at regional Local budgets pay for treatment at regional hospitalshospitals
RUSSIAN HEMOPHILIA SOCIETYNational member organization of the World Federation of Hemophilia
Lobbying
Regular contacts with federal authorities Regular contacts with federal authorities and informing them about the need to and informing them about the need to purchase factor concentrates.purchase factor concentrates.
Methods: meetings, official letters, letters Methods: meetings, official letters, letters from patients, letters of different groups from patients, letters of different groups and organizations, lobbying of deputies and organizations, lobbying of deputies of federal and local parliamentsof federal and local parliaments
RUSSIAN HEMOPHILIA SOCIETYNational member organization of the World Federation of Hemophilia
Results of lobbying activitiesResults 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 SOCIETYNational member organization of the World Federation of Hemophilia
Agreement with the Agreement with the authoritiesauthorities
RUSSIAN HEMOPHILIA SOCIETYNational 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 agreementThe goals of the agreement
RUSSIAN HEMOPHILIA SOCIETYNational 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 PWHRegistry of PWH
RUSSIAN HEMOPHILIA SOCIETYNational 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 PWHRegistry of PWH
RUSSIAN HEMOPHILIA SOCIETYNational member organization of the World Federation of Hemophilia
930
676
1205
4563
Hemophilia A
Hemophilia B
vWD
Other bleeding disorders
Registry of PWHRegistry of PWHThe 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 National standards of hemophilia treatmentof hemophilia treatment
RUSSIAN HEMOPHILIA SOCIETYNational member organization of the World Federation of Hemophilia
Structure of standard Structure of standard hemophilia treatmenthemophilia treatment
RUSSIAN HEMOPHILIA SOCIETYNational 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 SOCIETYNational member organization of the World Federation of Hemophilia
Preliminary analysis of Preliminary analysis of questionnaires of persons with questionnaires of persons with
hemophilia at April 4, 2008hemophilia 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 SOCIETYNational member organization of the World Federation of Hemophilia
RUSSIAN HEMOPHILIA SOCIETYNational member organization of the World Federation of Hemophilia
General patients’ General patients’ characteristicscharacteristics
• 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 SOCIETYNational member organization of the World Federation of Hemophilia
Distribution according to Distribution according to diagnosesdiagnoses
• 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 SOCIETYNational member organization of the World Federation of Hemophilia
FVIII and FIX levels in 299 FVIII and FIX levels in 299 patientspatients
Level
RUSSIAN HEMOPHILIA SOCIETYNational member organization of the World Federation of Hemophilia
Number of bleeding episodes in Number of bleeding episodes in patientspatients
RUSSIAN HEMOPHILIA SOCIETYNational member organization of the World Federation of Hemophilia
Frequency of factor injections a Frequency of factor injections a monthmonth
Total number of injections (of 289 patients) – 1827
Average – 6,3 a person
RUSSIAN HEMOPHILIA SOCIETYNational member organization of the World Federation of Hemophilia
Ways of factor obtaining Number of patients
From a district doctor 7
From a hematologist 30In a pharmacy 242
In a hospital 14
Other way 3From a hematologist and in a pharmacy 9From a hematologist and in a hospital 0From a hematologist and in a hospital 4Did not obtain 4From a district doctor and in a pharmacy 2
Embarrassed to answer 3
Unknown (probably did not obtain) 37
Ways of factor obtainingWays of factor obtaining
Number of hospitalizations Number of hospitalizations during the last monthduring the last month
Total number of hospitalizations (of 324 patients) – 47
Average – 0,1 a person
RUSSIAN HEMOPHILIA SOCIETYNational member organization of the World Federation of Hemophilia
RUSSIAN HEMOPHILIA SOCIETYNational member organization of the World Federation of Hemophilia
Methods of injections Number of patients
Without assistance (or with relatives’ assistance) 192
In outpatients' clinic (by a nurse) 77By 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 5Emergency care and in a hospital 1Unknown 35
Methods of injections Methods of injections
RUSSIAN HEMOPHILIA SOCIETYNational member organization of the World Federation of Hemophilia
Product Number of patients
Agemfil A 5
Agemfil B 5Aimafix ® 2Willate®
0
Hemactin STD® 76Hemophil M® 14Immunate®
39
Immunine® 19Kogenate FS® 0
Koate DVI® 16Recombinate®
4
Octanine-F®16
Octanine®5
Octanate®90
Emoclot®4
Unknown 42
Patients receive the following Patients receive the following productsproducts
RUSSIAN HEMOPHILIA SOCIETYNational member organization of the World Federation of Hemophilia
Patients receive the following Patients receive the following productsproducts
Product Number 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 - movementQuality of life rate - movement
RUSSIAN HEMOPHILIA SOCIETYNational member organization of the World Federation of Hemophilia
Quality of life rate – self-serviceQuality of life rate – self-service
RUSSIAN HEMOPHILIA SOCIETYNational member organization of the World Federation of Hemophilia
Quality of life rate – everyday Quality of life rate – everyday activityactivity
RUSSIAN HEMOPHILIA SOCIETYNational member organization of the World Federation of Hemophilia
Quality of life rate – pain and Quality of life rate – pain and discomfortdiscomfort
RUSSIAN HEMOPHILIA SOCIETYNational member organization of the World Federation of Hemophilia
Quality of life rate – Quality of life rate – anxiety and depressionanxiety and depression
RUSSIAN HEMOPHILIA SOCIETYNational member organization of the World Federation of Hemophilia
Quality of life as compared Quality of life as compared with the last yearwith the last year
RUSSIAN HEMOPHILIA SOCIETYNational member organization of the World Federation of Hemophilia
Further development of Further development of social program in Russiasocial 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 SOCIETYNational member organization of the World Federation of Hemophilia
Further development of Further development of social program in Russiasocial 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 SOCIETYNational member organization of the World Federation of Hemophilia