Rus News Journal

In Bashkiria have started to form the register of patients with rare diseases

Instead of the list of seven diseases which operates today and it is provided with financial guarantees from the federal budget, 24 kinds will enter into it orfannyh - that is most seldom meeting illnesses.

In republic on the account at physicians 780 patients with such diseases among which there is more than half, 485 persons, - children consist.

- In 80 percent of cases of the reason of occurrence of rare diseases are covered in genetics and are accompanied by the symptoms menacing to life, - has underlined in conversation with the correspondent the deputy minister of public health services RB of Ralida Shakirov.

In republic there is a modern diagnostic base for revealing of genetically dangerous illnesses already at a stage perinatalnogo developments of the child. However any, even the most advanced medical equipment not always can distinguish a heavy pathology. Besides not all the parents warned by physicians that at them can appear the unhealthy child, dare at pregnancy interruption.

the Main problem for the patients having orfannye diseases, are very expensive medical products which simply it is too expensive for the majority of families. For example, for treatment of illness of Fabri - the rare hereditary disease connected with accumulation glikolipidov - products of splitting of fats and accompanied by a burning pain in hands and feet, rise in temperature of a body and other symptoms, it is necessary an order of fifteen millions roubles in a year. In Bashkortostan there is such patient to whom 21 year was executed, and now to the young man medical products urgently are required. At his family of the necessary sum of money for their acquisition is not present.

Since 2012 this patient as, however, and other patients with the rare diseases entering into the list from 24 nozology, will receive medicines free of charge, at the expense of the state. It is supposed that legislatively fixed list of rare illnesses will constantly extend, as their full list includes more than two hundred names, and corresponding financial powers will be assigned on subjects of the Russian Federation. Under forecasts of physicians, enormous means will be necessary for republic - it is a question of billions roubles. Meanwhile, real possibilities of the regional budget where as are more modest.

- In 2012 for needs of all system of public health services of Bashkortostan it is put 26,6 billion roubles, - the deputy minister of the finance of RB Zinur Bakirov has informed. - From them for treatment of patients with rare diseases it is planned to direct about 600 million roubles.

Representatives of legislative and executive power of republic consider that on free maintenance of patients with orfannymi diseases all - taki more solid source - the federal budget should incur account obligations.

- Besides the notable financial help to the Russian subjects, this measure will allow to provide the equal rights of the patients living in different regions of the country which budgetary possibilities very strongly differ from each other, - has noticed the vice-president of State meeting - Kurultaja RB Lilija Gumerova.

Republican members of parliament intend to make the offers about it in the lower chamber of Federal Meeting of Russia and to address for support to ours zemljachke - to the deputy of the State Duma of the Russian Federation Salie Murzabaevoj.