Russian President Vladimir Putin announced the creation of the Circle of Kindness Foundation, whose activities will be aimed at supporting children with rare diseases. 

“I have on my table a draft decree on the creation of a fund ... to support children with severe life-threatening and chronic, including rare, so-called orphan diseases.

We decided to call this fund “The Circle of Kindness,” the head of state said during a meeting on social issues.

He clarified that the funds received as a result of the increase in the personal income tax rate for citizens whose incomes exceed 5 million rubles will be transferred to the fund's account.

“Thus, we will receive an additional income of about 60 billion (rubles. -

RT

).

We agreed that we will create a fund, which I have already mentioned, and direct it for these purposes - to support children who need expensive medicines, ”Putin explained.

In turn, Deputy Prime Minister Tatyana Golikova said that an expert council will be created at the fund, which will be formed from the main freelance specialists in various diseases at the Ministry of Health, representatives of the scientific and educational community, religious and non-profit organizations.

In addition, the expert council will include working groups on medicine and ethics.

The task of this structure, according to Golikova, will be to form a list of life-threatening conditions and a list of categories of children with such conditions, as well as to assess "the presence of medical indications and contraindications for providing children with drugs, medical devices and rehabilitation means."

According to preliminary data from specialists of the Ministry of Health, about four thousand children with rare diseases will be able to receive help from the fund in 2021.

The Circle of Kindness will provide support for about 30 diseases, and will allocate funds for the purchase of 41 types of drugs - currently 47 billion rubles are expected to be allocated for these purposes.

About 1 billion rubles are planned to be allocated to provide about 5 thousand children with medical products, and 3 billion rubles.

- for technical rehabilitation funds for more than 10 thousand children.

“The most important thing is, first of all, to purchase medicines for a group of children who suffer from an already well-known disease called spinal muscular atrophy,” Golikova emphasized during the meeting.

According to the operational data announced by her, treatment has already begun for 466 children diagnosed with SMA, despite the fact that there are 890 minors in the existing register with spinal muscular atrophy.

According to Golikova, only 23 children received the single-dose drug Zolgensma, 248 children receive the drug Spinraza.

There are 187 children in the free access program for the Risdiplam drug, and the manufacturer provides them with patients before the drug is introduced into civil circulation (until May 2021), the Deputy Prime Minister said.

“I would like to draw your attention to the fact that we are closely monitoring this situation and will continue to monitor it ... We intend to adopt all documents in the very near future so that this mechanism will fully work,” Golikova added.

SMA patients

Recall that spinal muscular atrophy is a hereditary disease in which the entire musculature, including the respiratory one, gradually atrophies.

Most children (about 82%) with this genetic condition die before they are four years old.

There are currently three medications available to help with SMA.

The drugs "Spinraza" and "Evrisdi" ("Risdiplam") are registered in Russia, they inhibit the development of the disease, but they must be taken throughout life.

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Another drug, Zolgensma, is taken once, but it is currently under registration in the Russian Federation.

At the same time, the cost of these drugs is extremely high - only the first course of Spinraza costs about 48 million rubles, and for a single injection of Zolgensma you have to pay about 150-160 million rubles.

In November, Prime Minister Mikhail Mishustin signed a decree on the inclusion of Spinraza in the list of vital and essential medicines. 

RT, within the framework of the charitable project "We will continue to act", helps families of patients with SMA in raising funds necessary to receive the medicine and subsequent rehabilitation.

At the moment, the project "DDBM" helps 27 families with such children.

Also in October, RT sent out a letter to Russian businessmen from the Forbes list urging Lena Yamkovsky from Astrakhan, who suffers from SMA.

Dozens of Russian celebrities signed up for this request.

On October 28, the boy's parents closed fundraising for the drug "Zolgensma".