Volume 2, July 2006 - EHC

Volume 2, July 2006RUSSIANHAEMOPHILIA SOCIETYRussian Hemophilia Society founded in 2000 onbasis of one of the oldest Russian hemophiliaorganization the Association for Persons withHemophilia (founded in 1989). We have 61 regionalchapters all over Russian Federation.Russian Hemophilia Society represents interestsof regional chapters at federal authorities, assistsregional chapters in implementing federal programsof treatment and rehabilitation of personswith hemophilia, offers communication programs(web-site, publications, workshops),strengthens interregional contacts, assists andcoordinates activities of the regional chapters,broadens international contacts and cooperation.During 2004 and at the beginning of 2005, theRussian authorities reformed the health care andsocial system. This meant a change in drug supplyfor patients.Before 2005 federal funding was provided by theMinistry of Health. Preparations were for specializedtreatment (for surgery mainly) in FederalHTCs. Local allocations used for routine treatmentfor PWH. Funding was provided from regionalbudgets of 88 regions of Russia.We have regular contacts with federal authoritiesand informing them about the need to purchasefactor concentrates. As a result factor VIII, factorIX concentrates and eptacog (NovoSeven®) areincluded in the list of free-of-charge prescribeddrugs (the Ministry of Health order #321 of24.12.2004). For the first time in Russia, a personwith hemophilia got an opportunity to receivefactor concentrates for home treatment with noofficial restriction on dosage/amount of factor tobe supplied. On 20 May 2005, the RHS concludedan agreement with the Federal Service of HealthCare Control and Social Development on thepublic monitoring of the implementation of allhemophilia care reforms.We have achieved significant results. There was0.2 IU per capita in 2004, in 2005 it increased upto 0.7 and in 2006 we expect about 1.2 IU percapita.Activity of RHS founded on close connection withfederal hemophilia treatment centers in Moscow,St-Petersburg, Kirov and Barnaul.Nowadays federal budget pays for factor supplyfor patients having an official status of “disabledperson” and for treatment in federal HTCs. Localbudgets pay for routine and in-patient treatmentfor persons with hemophilia without status of“disabled person”.Today’s main objectives of RHS are protection ofinterests of persons with hemophilia during thereform and information of the regional chaptersand health specialists on the mechanism of thereform implementation.13