Experts offered a transfer to the federal level funding therapy ten rare diseases

 

According to the survey conducted in 63 Russian regions in 2012-2013 by the Center for the study and analysis of the problems of population , demography and health EvrAzE Institute of funding the treatment of these diseases is an unbearable burden for regional budgets , which is why thousands of patients do not receive adequate treatment. 

- Given that people have a constitutional right to receive treatment free of charge , the regions do not always allocate sufficient funds for this purpose . In St. Petersburg, for example , the city government bought all the drugs only after several court cases , but the performance of all other city programs have been suspended . Therefore, we consider it appropriate to consider mechanisms for financing health care for patients with rare diseases are not only due to regional , but also at the expense of the federal budget - said the executive director of the National Council of Experts on Rare Diseases , professor of internal medicine and nephrology them SZGMU II Mechnikov Alexei Sokolov . 

According to expert estimates, in 2014 the real need for financing the treatment of rare diseases will be about 24 billion rubles. In this case the actual cost regions now barely reach 9 billion according to the monitoring , the average per average patient today regions spend a little more than 990 thousand rubles a year , whereas only to adequately meet the needs, according to the experts , this figure should be at least one and a half times higher. 

- On the one hand the financing gap is reduced fr om 54% in 2012 to 39 % in 2014 . But if we take the absolute amounts , we can see that the deficit is growing. In eight regions deficit ranges from 40 to 60 % , in seven regions - more than 80 %. But even in relatively rich regions are not always all things well: there have been cases wh ere patients requiring expensive treatment revealed a disease simply do not contribute to the register , - says Alexei Sokolov . 
 

However, along with financing , experts on rare diseases and point to other issues of therapy of rare diseases that require urgent solutions . Among them - the need for a mechanism of state regulation of prices for drugs with the development of appropriate legal and regulatory framework , the centralization of procurement , development of standards , criteria and mechanisms for evaluating the effectiveness of health care. 

In addition, experts believe it appropriate to create a network consultation and diagnostic centers for rare diseases at the regional , district and federal level -specific pre-existing medical organizations. Industry representatives believed it would achieve simplify logistics and quality control patients received their treatment.