the Bureaucracy can cost lives: there is a serious illness, when time is crucial. How to use money from taxation of people whose income exceeds 5 million rubles a year? About it on air of TV channel “Russia 24” said the Commissioner for children’s rights in Russia Anna Kuznetsova.
— Hello, Anna! Thank you for joining us. A tax increase on the rich will give, said Vladimir Putin, about 60 billion rubles. The money will be spent to help children with rare diseases. How this amount is substantial, massive compared to the scale of the assistance needed?
— In the President’s speech sounded a lot of answers to questions, it was so sensitive. With regard to this patient’s question — provision of medicines children with orphan diseases, which until recently was literally hanging in the air. Not so long ago at the meeting with the President and with large families, I raised the issue of children with SMA — spinal muscular atrophy. This issue was discussed repeatedly, including we have seen growth of more 80 percent just to provide children with orphan diseases medicines. Just yesterday we discussed again this subject. And here is the answer to the question that stood before many. The amount is sufficiently serious, imposing. Yes, we know that one child drug can cost about 50 million rubles, but we know and understand, and it was also expressed in the President’s speech that other measures of support continues, there is a plus to all support measures. Moreover, I would like to say: it is important that the above mechanism and the need for a transparent process of transferring this money to the children. This is also a very important point. So I hope, and thousands of families hope that this decision will come is welcome.
Children with spinal muscular atropia, if I’m not mistaken, the necessary injection that costs some absolutely big money, or a million, or two million dollars. This injection must be done up to two years?
— There are several treatment options. This can be one drug one the introduction, there is a drug “Spinoza”, which is already registered in the territory of the Russian Federation. We also tried: first, to achieve registration now understand that the next step came — it is necessary to achieve its availability. But here we see the answer to this question. I understand that the mechanisms have yet to be created. The President just said this: there must be mechanisms. I hope the new year will begin paying taxes to January 1, this mechanism is in place, transparent, clear. And, most important, it was possible to avoid this bureaucracy, which delays the time. In the case of the disease that you mentioned, time is crucial. The sooner the child give the medicine, the greater the effect, the higher the chances of recovery.
– Anna, I want to ask again about the social benefits to children from 3 to 16 years for 10 thousand rubles. This payment is automatically renewed. As substantial payments? Many say that more the better, of course.
— During the period of isolation and quarantine, restrictive measures, the social issue has become a top. Only recently she started to slow down a little bit intensity and their intensity. Very much in demand for social care and support, ranging from the elimination of bureaucratic mechanisms, ending with the problems and situations facing some families. So this payment was one of the most popular. This is evidenced by the following indirect even for the fact that so many families had requested the increase in age of recipients of this payment from 16 to 18. We appropriate treatment, wrote to the government, butsuch a decision is made on regional levels. This Kursk oblast, Tver, Crimea — they have already taken the decision on payment from 16 to 18 years old these children. I believe that it deserves support in the complex. All these measures, of course, have to help families. Certainly these funds will be not superfluous.
— Thank you, Anna!