1. Estimating Access to Health Care in Russia O.V. Borisenko, P.A. Vorobyev Russian Forum XI ISPOR XI European Congress of ISPOR10.10.2008

2. Equity and accessibility Financial equity – justified sharing of spending for health care between population, society, government, industry – according to their opportunities Medical equity – each patient has access to MEDICAL CARE that he/she needs P.A. Vorobiev, 2008

3. Availability of drugs = availability of medical care ??? Often, there is funding only for separate elements of medical care (fragmented): “Program 7 rare diseases”: drugs, but no diagnostics (catastrophic situation with diagnostics of diseases and monitoring the effectiveness of drugs), lack of training for primary care staff, specialists, patients, poor logistics of drug distribution, not all drugs and not to everyone

4. , МЕ Consumption of the VIII clotting factor in Russia, МЕ per capita RUSSIAN HEMOPHILIA SOCIETY National member organization of the World Federation of Hemophilia, 2004 – 14 Consumption of clotting factors increased in 59 times since 1996, since 2004 – in 14 times

5. What is being done on hemophilia?, 2004 – 14Consumption of clotting factors increased in 59 times since 1996, since 2004 – in 14 times There are standards of medical care and protocols of care for patients with hemophilia and von Willebrand's disease Several annual conferences and schools for doctors and patients Offices of All-Russian Society on Hemophilia (ARSH) in 61 subjects of Russian Federation

6. Results of the joint study of RSPOR and Russian Hemophilia Society (12.2007- 02.2008) The portion of patients on preventive treatment in the absence of bleeding – 3,2%!!! The portion of patients who experienced bleeding during the last month – 65,9%!!! The average number of bleeding during the last month (median)– 4!!! 58,4 71,5However, patients on ineffective treatment with bleeding rate the quality of life as 58,4 against 71,5 in the group of preventive treatment and the lack of bleeding (p <0.05) The situation in hemophilia is the best among all diseases, for other diseases the situation is unknown

7. What have we learned? “To hand out” drugs “To wrest” money from the Government To conduct training seminars and conferences To develop standards and protocols What do we have in discharge?

8. Shall we continue to «measure» the effectiveness of government programs and investment by general fertility, mortality, etc.? Sensible and valid indicators of quality are necessary Assessing the impact - in the monitoring research (RSPOR studies hemophilia, multiple sclerosis, prepares the study of myeloma, lymphoma, Gaucher disease, mucopolysaccharidosis) Rating «at the entrance» (appearance of drug) and then – annual control Evaluation of the whole population of registered patients – data for the really effective register of patients

9. Quality indicators of the program on drug supply for patients with hemophilia The portion of patients on preventive treatment in the absence of bleeding (more than 8 introduction of clotting factor per month) The portion of patients who experienced bleeding during the last month The portion of patients, registered after 2005, infected with HBV/HCV, HIV The portion of patients, registered after 2005, who have a «fresh» joint destruction The patients’ quality of life The number of days during last three months, which were spent on obtaining drugs (writing out a prescription, visit to the drugstore)