russian hemophilia society national member organization of the world federation of hemophilia...

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 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


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


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


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 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


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, , 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


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 activities For the first time in Russia,

a person with hemophilia has an opportunity to receive factor concentrates for home treatment.


Agreement with the Agreement with the authoritiesauthorities


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 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


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


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 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.


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



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


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%)


FVIII and FIX levels in 299 FVIII and FIX levels in 299 patientspatients

Level


Number of bleeding episodes in Number of bleeding episodes in patientspatients


Frequency of factor injections a Frequency of factor injections a monthmonth

Total number of injections (of 289 patients) – 1827

Average – 6,3 a person


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



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


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


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


Quality of life rate – self-serviceQuality of life rate – self-service


Quality of life rate – everyday Quality of life rate – everyday activityactivity


Quality of life rate – pain and Quality of life rate – pain and discomfortdiscomfort


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 Concomitant disorders connected to to

the main diseasethe main disease

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


8 9,5 5,7331 32

115

231 230

454

13,9630219,20

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


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

0,788

1,63 1,6

3,2

0,0950,2050,1440,0630

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 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.


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 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

russian hemophilia society national member organization of the world federation of hemophilia...

Documents

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