Activity of the Russian Hemophilia Society in the ... · PDF fileRUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia Activity of the Russian

RUSSIAN HEMOPHILIA SOCIETYNational member organization of the World Federation of Hemophilia

Activity of the Russian Hemophilia Activity of the Russian Hemophilia Society in the Healthcare System Society in the Healthcare System

Reform in Russia Reform in Russia

Yuri ZhulyovPresidentRussian Hemophilia Society


Russian FederationRussian FederationPopulation – 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 chaptersregional chapters


Reasons for creation of RHS Reasons for creation of RHS

Centralization of authority in RussiaLarge power of the federal authorities Wish of regional patients’ groups to create a national organizationRecommendations from WFH


Difficulties at the creation of RHSDifficulties at the creation of RHS

Disconnection of persons with hemophiliaLack of information in Moscow about potential regional active volunteersPoor financial and technical abilitiesVery difficult process of registration of national public organizations in the Ministry of Justice


From beginning we defined three tasks as From beginning we defined three tasks as the main mission of our organization: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 SocietyRussian Hemophilia Society

represents interests of regional chapters at federal represents interests of regional chapters at federal authoritiesauthoritiesassists regional chapters in implementing federal assists regional chapters in implementing federal programs of treatment and rehabilitation of PWHprograms of treatment and rehabilitation of PWHoffers communication programs (weboffers communication programs (web--site, site, publications, workshops)publications, workshops)strengthens interregional contactsstrengthens interregional contactsassists and coordinates activities of the regional assists and coordinates activities of the regional chapterschaptersbroadens international contacts and cooperationbroadens international contacts and cooperation


Before 2005


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, , StSt--PetersburgPetersburg, , 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


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


Results of lobbying activitiesResults of lobbying activitiesFor the first time in Russia, a person with hemophilia has an opportunity to receive factor concentrates for home treatment.


Agreement with the authoritiesAgreement 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.

The goals of the agreementThe goals of the agreement


Creation of the Ministry of Health national registry of patients with hemophilia and other inherited bleeding disordersSpecification of regions’ requirements for factor concentratesInformation 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


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

Registry of PWHRegistry of PWH


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


Structure of standard Structure of standard hemophilia treatmenthemophilia treatment


I. Area of implementationII. Legal referenceIII. GeneralitiesIV. Implementation of standardsV. General issuesVI. Characteristics of requirements:6.1. Patient's model – primary diagnostics6.2. Patient's model – prophylaxis6.3. Patient's model – hemorrhages of different body locations6.4. Patient's model – condition requiring hospitalization6.5. 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.


Preliminary analysis of questionnaires of Preliminary analysis of questionnaires of persons with hemophilia at April 4, 2008persons 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



General patientsGeneral 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


Distribution according to diagnosesDistribution 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%)


FVIII and FIX levels in 299 patientsFVIII and FIX levels in 299 patients

Level


Number of bleeding episodes in patientsNumber of bleeding episodes in patients


Frequency of factor injections a monthFrequency of factor injections a month

Total number of injections (of 289 patients) – 1827

Average – 6,3 a person


Ways of factor obtaining Number of patientsFrom a district doctor 7From a hematologist 30In a pharmacy 242In a hospital 14Other 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 2Embarrassed to answer 3Unknown (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



Methods of injections Number of patientsWithout assistance (or with relatives’ assistance) 192In outpatients' clinic (by a nurse) 77By an emergency care 29In a hospital 38Without 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


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

Patients receive the following productsPatients receive the following products


Patients receive the following productsPatients receive the following products

Product Number of patientsNovoSeven®

5

Cryoprcipitate 5Fresh frozen plasma 2FEIBA®

0Clotting factors complex 76DDAVP 14Local haemostatics 39Unknown 42

Quality of life rate Quality of life rate -- movementmovement


Quality of life rate Quality of life rate –– selfself--serviceservice


Quality of life rate Quality of life rate –– everyday activityeveryday activity


Quality of life rate Quality of life rate –– pain and discomfortpain and discomfort


Quality of life rate Quality of life rate ––anxiety and depressionanxiety and depression


Quality of life as compared Quality of life as compared with the last yearwith the last year


• Hepatitis – 96 patients (29,6%)• Musculo-skeletal disorders – 50 patients (15,4%)

Concomitant disorders connected to Concomitant disorders connected to the main diseasethe main disease

Total factor VIII concentrate supply in Total factor VIII concentrate supply in Russia, millions IURussia, millions IU


8 9,5 5,7331 32

115

231 230

454

13,96 30219,20

50

100

150

200

250

300

350

400

450

500

1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008

Factor VIII concentrate supply in Russia, Factor VIII concentrate supply in Russia, IU per capitaIU per capita


0,054 0,065 0,0390,212 0,219

0,788

1,63 1,6

3,2

0,095 0,2050,1440,0630

0,5

1

1,5

2

2,5

3

3,5

1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008

Further development of social Further development of social program in Russiaprogram 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.


Further development of social Further development of social program in Russiaprogram 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.


“Say YES to LIFE”

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

Documents

Activity of the Russian Hemophilia Society in the ... · PDF fileRUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia Activity of the Russian