The legislation provides for the right of patients with rare diseases to receive appropriate medications from the budget of the region. However, many passed to apply to the court to provide itself with the necessary means. Sometimes patients simply do not list those in need, hoping that this will solve the problem. It should be noted that such cases are not uncommon. Turning a blind eye to this problem, the regions worsen their situation, and the government loses the loyalty of citizens.
Rare diseases in Russia are considered to be diseases, occurring not more than a dozen people per 100 thousand population. In the case of such patients had about ten thousand. They all have free to get the required medications. It is worth noting that 60% of them are children who need help. Medications for the treatment of rare pathologies are extremely expensive, the majority of patients they simply cannot afford it. That is what their leads to trips to the court and attempts to collect the necessary funds through a special organization. The cost of treatment, doctors note, can reach up to 30 million per year per patient. By law, these funds must be allocated from the regional budget.
The most costly diseases identified by means of monitoring, was paroxysmal nocturnal hemoglobinuria, atypical haemolytic uraemic syndrome, mucopolysaccharidosis. Experts note that none of the regional budget cannot cover the cost of treatment of such patients in full.
A relatively positive trend on this issue is noted in the major cities. In St. Petersburg on the treatment of paroxysmal nocturnal hemoglobinuria gets 10 people. In Moscow, as none of the nine who need treatment do not receive medication.
Many regions of the bypass system method "no patient " no problems". So, they just don't put new patients with rare diseases in the register. This method is though illegal, but the most simple and obvious.