In 1989 in Moscow was created the Association for persons with hemophilia - the public organization, called to defend interests of patients with hereditary bleeding disorders in our country. It was one of the first such organizations established in Soviet Union.
From the very beginning of the existence it put before herself three main goals:
- assistance to improvement of medical care to patients with hereditary bleeding disorders;
- social protection of patients and members of their families;
- spreading the information and population education.
These purposes remain actual even today and are the basic directions of work for many societies of patients.
Logical development of our long-term work was creation of the Russian Hemophilia Society (RHS) in September 2000 as essentially wider uniting organization with the wider possibilities to solve problems for persons with hemophilia at federal level. Now the Russian Hemophilia Society consists of 62 regional organizations.
Main goals and tasks of the RHS:
- representation of patients' with hereditary bleeding disorders interests at federal and regional authorities;
- assistance in working out and realization of federal programs in the field of treatment and rehabilitation for persons with hemophilia;
- assistance in designing and adoption of the national register for persons with hemophilia;
- creation of information centre;
- assistance and coordination of the regional organizations' activities;
- expansion of the international contacts and cooperation with other public organizations;
- formation of public opinion by spreading the information on activities of RHS and hemophilia problems in Russia.
The primary goal of our organization is to inform the public and the authorities, that the hemophilia is socially significant problem, that the life of such patients entirely depends on adequacy of their treatment with the vital medicines, and a debt of the civilized and socially referred state - to give to the citizens, with this disorders, all conditions not only for maintenance of their "existence", but also for appreciable improvement of quality of their life and social adaptation in a society.
Within the limits of information programs RHS publishes the special literature for patients, members of their families and health professionals, «the hemophilia School» holds the all-Russian and regional scientifically-practical conferences, workshops for patients, supports the informational web-portal "Hemophilia in Russia".
During the 20 years of work of our organization together with leading experts in the area we have developed accurate algorithm for advocacy of persons' with hemophilia interests.
It is necessary to notice, that a unique way of prevention of disabling and hemophilia treatment is use of viral inactivated clotting factor. Treatment should begin with the earliest patient's age. Then still it is possible to prevent irreversible damages of joints, and, as consequence, physical inability.
The basic model of treatment for persons with severe hemophilia, is prophylactic treatment when the patient infuses himself factors concentrate at home not depending on presence of bleeding at the time. Experience of foreign countries and some regions of Russia where prophylactic treatment is already realized for a long time, shows, that invalidism level at such treatment does not exceed 10%. For comparison, in those regions of Russia where therapy at home conditions has just now begun, for persons with hemophilia incapacitated 95%, and more than 90% of patients with the severe form of disease, according to the Hematological centre of science of the Russian Academy of Medical Science, plasma and a cryoprecipitate have been infected with hepatitis B and C through such blood preparations. Therefore a state duty is to provide not only efficiency of treatment, but also its safety.
On the beginning of 2002 started a cooperative program among Hematological Centre and RHS and it has been included to the GAP program. 7374 patients have been included in register of the Hematology research Center of the Russian Academy of Medical Science and RHS.
Certainly, huge event for persons with hemophilia was including of factor concentrates to the list of the medicines given within the limits of the special state. For the first time in history our country patients in different regions of the country could receive expensive medical products in drugstores on a residence. It was noticed 3-4 times decrease of persons with hemophilia quantity of hospitalization. Patients left the hospitals and they had a possibility to start their high-grade lives!
Realization of the centralized purchase in 2008 has allowed to save federal funds at the expense of more optimized process of purchase and, as consequence of it, depression of procurement prices.
Centralized purchase and the subsequent distribution on the basis of registers of patients is the most widespread kind in the world of medicinal maintenance of this group of the population (in the Russian Federation - nearby 50 000 persons) and allows to carry out the strict control over an expenditure of federal budgetary funds. It is considered economically not favorable instead of one national competition (auction) carrying out of numerous regional purchases.
Allocation of the specified disorders from the general federal program is, in our opinion, the correct decision since only to the federal authorities financing of medicinal maintenance rare is feasible, but extremely expensive disorders. The uniform system of purchase and delivery of medical products allows to supervise all process more effectively.
Especially it would be desirable to notice, that carrying out of the centralized auction on the one hand has lowered procurement prices of factor concentrates, and on the other hand has not admitted monopolization of the Russian market of these preparations.
Also you may download a presentation of our president, Yuri Zhulyov in Adobe Acrobat format , where you can find more facts on hemophilia life in Russia
Address of Russian Hemophilia Society
Naryshkinskaya alleya 5 st.2, Moscow, 125167 Russia
Tel.: +7-495-748-0510; +7-495-612-2053