March 2nd, 2012

Russia first made a list Rare diseases , Which included the 230 most common diseases of hereditary nature. The other day, reported Tatyana Golikova, Minister of Health and Social Development. A separate list was presented illness, life-threatening and lead to disability Consisting 24 items. For them, already have medical technologies and medicine That stop progression of the disease and not just remove it symptoms . In addition, it was noted that to date, this list is open, and he could at any time be supplemented by a decision of non-governmental organizations and senior specialists.

Also, as the minister said, it has been extended another list - "7 Diseases", which involves the purchase of medicines for patients with certain diseases due to the federal budget.

Now experts are trying as quickly as possible to create lists of patients by region, the law took this job six months.

The need for such a law existed for a long time for the reason that, for the treatment of rare genetic diseases, drugs are usually very expensive, and the patient needed throughout life. Therefore, self-sufficient in patients generally can not. With this year came into effect a new law on the basics of health protection, and now provide all patients with rare diseases medicines will be required to the regional budget. Thus, the faster will registers patients, the patients will receive the necessary preparations.

However, aid to the needy patients, but not related to the "Orphan", only worse. Golikova confirmed that some regions have already reduced their spending on the purchase of medicines for asthmatics, diabetics and cancer patients . According to the minister, he is now preparing a letter calling for the resumption of funding.

However, the situation is such that even the richest countries can not fully cope with the problem of the full payment of the treatment "orphan" patients. Developed countries build health systems based on insurance. The patient pays only a fraction of the price of the drug, and the rest - the insurance company. The state, in this case supports the manufacturers of these drugs. This is due to the fact that the manufacture of such preparations is unprofitable because of the small number of these "orphan" patients. In addition, charitable programs can significantly help such patients, a practice that is widespread throughout the world.