Control over the treatment of orphan diseases want to pass on a Federal level


In 2018 it is planned to transfer authority for treatment of orphan (rare) diseases from the regional to the Federal level, reports RIA “Novosti”. This will allow you to purchase medicines for the treatment of patients with rare diseases centrally by the Ministry of health of the Russian Federation.

Now parents are forced to carry children suffering from rare diseases in major cities – Moscow and St. Petersburg in the regions of the Russian Federation for the purchase of medicines for no means. At the Council meeting on regional health care under the Federation Council on Wednesday, February 8, there was information that one Governor even bought an apartment in Moscow, to register there child with orphan disease.

“The Ministry of health and the Federation Council are working (on this issue) with the Minister of Finance of Russia, – said the speaker of the Federation Council Valentina Matvienko. – He promised that this year will be a system decision on the withdrawal of this authority in subjects of the Federation and the transfer to the Federal level. To the (Federal) Ministry of health centrally bought drugs for orphan patients”.

Valentina Matviyenko expressed confidence that the transfer of authority for the treatment of rare diseases at the Federal level will improve the monitoring process. She also said that in 2019 for the treatment of orphan diseases will be allocated 9 billion roubles. “First and foremost, of course, you need to “close” the children,” she said.

Previously, we reported that at the present time in Russia more than 50 thousand patients with rare (orphan) diseases are deprived of necessary treatment. The drugs to treat these diseases is, however, they are not available for many patients with rare diseases due to a lack of funding within Federal and regional budgets.

Centralized procurement of drugs at the expense of the Federal budget for treatment of rare diseases is carried out only within the framework of the state program “7 nosologies” for patients with diseases such as haemophilia, cystic fibrosis, pituitary dwarfism, Gaucher disease, myeloleukemia, multiple sclerosis, and for conditions after transplantation. To date, this program sufficient funded in only 14 regions of Russia.

According to the Association of organizations of patients with rare diseases “Genetics” now there are more than 200 rare diseases that afflict 1.5 million Russians.