Children with spinal muscular atrophy, a disease in which muscles atrophy, often also those responsible for breathing, will receive treatment at government expense.

Russian Deputy Prime Minister Tatyana Golikova told reporters about this after a meeting between Russian President Vladimir Putin and members of the government, at which they discussed the organization of assistance to children with serious and rare diseases.

According to the Deputy Prime Minister, this type of SMA has become more common, and parents cannot afford expensive drugs for its treatment.

The cost of a loading course of injections of Spinraza (the only drug currently registered in Russia to stop the course of the disease) is about 40 million rubles.

Another 20 million rubles is worth each subsequent year of therapy, which needs to be carried out for a lifetime.

In June 2020, Vladimir Putin proposed to change the tax rate on personal income over 5 million rubles per year from 13 to 15%.

From January 1, 2021, the increased rate will be imposed on the part of income in excess of this amount.

According to the head of state, as a result, the budget will receive an additional 60 billion rubles.

It was decided to use these funds for the treatment of children with serious, rare diseases, the purchase of expensive medicines, equipment, rehabilitation means and consumables, as well as for high-tech operations.

As Tatyana Golikova clarified, the list of diseases, the treatment of which will be financed from these funds, now includes 19 orphan and 29 life-threatening diseases, including oncological and endocrinological trends.

According to the Deputy Prime Minister, about 25 thousand children will be able to receive help.

A special fund will manage funds, select patients and purchase drugs for them.

“Now, together with the presidential administration, we are working on the composition of the fund's supervisory board.

But, as the president said, these should be respected people who have indisputable authority in our society.

In addition, a board of trustees of the foundation will be created, and it will also include authoritative, respected people who are engaged in charity today, who help our children, our families and head leading medical organizations, ”Tatiana Golikova said.

Also, the foundation will have expert and ethical councils, which will include the main freelance specialists of the Ministry of Health.

They will ensure that the prescriptions, drugs and medical technologies used "have evidence-based effectiveness and really make it possible to change the quality of life and improve the health of children."

The funds of the fund should become an addition to the existing resources of the federal and regional budgets allocated for these purposes, Golikova emphasized.

“Neither the federal budget, nor the budgets of the constituent entities of the Russian Federation can reduce the financial provision of privileged categories of citizens who receive medicines, when creating this new instrument.

Funds in the budgets should not decrease, but, on the contrary, even increase depending on the changing therapy, ”added the Deputy Prime Minister.

  • Tatiana Golikova

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"Criteria are not valid"

According to Olga Germanenko, director of the “Family of SMA” foundation, the creation of councils at the foundation will make the organization's work more transparent, as well as increase the level of public confidence in the initiative.

“This is important not only for the state, but also for citizens, especially for those taxpayers, from whose funds this fund will be financed.

The main thing is that the advice of each other does not duplicate functionality, ”she explained to RT.

It is necessary to clarify what is meant by patient selection, says Olga Germanenko.

“Now there are 817 children in the register of our foundation.

SMA is of a single genetic nature and each patient faces the same thing: the inevitable worsening and progression of the disease.

Therefore, the introduction of any criteria, for example, according to the severity of clinical manifestations and the age of the onset of the first symptoms, is unacceptable here, the director of the foundation believes.

- Perhaps, it means other diseases included in the list, for which there are already some programs.

In any case, there is not enough specificity. "

The main issue, according to Olga Germanenko, is the start date of the program - it should start working from January 1, 2021.

However, funds from the increased personal income tax rate will go to the budget only in 2022.

Perhaps the money will be transferred in advance, suggested the director of the "Family of SMA" fund.

“In such a situation, it is extremely important that the regions do not exclude patients when planning budgets for the next year.

In addition to those who should already receive medicines from them, there are a lot of patients who so far participate in humanitarian programs of pre-registration access to medicines and are formally excluded from this list.

But the programs will end, and the need for treatment will remain.

And, perhaps, it will be necessary to treat not "Spinraza", but "Zolgensma" or "Evrisdi" - both drugs are undergoing registration in Russia.

Plus, there are families who do not yet have the appropriate recommendation of a medical council or a court decision, ”she said.

"The disease does not wait"

Parents of children with SMA believe the new funding principle will make treatment more affordable.

“I believe and hope that this program will work and will bear fruit,” said Yulia Yamkovskaya, a resident of Astrakhan, whose son Lenya suffers from SMA, to RT.

- But there are situations when the deadlines are tight, the next injections of "Spinraza" are urgently needed.

Or the child is about to turn two years old and he will not be able to receive treatment with another drug - Zolgensma, which is not yet registered in Russia.

In such a situation, only the fees remain.

But those who have a little time will be able to wait until the system works. "

Meanwhile, Ekaterina Arkhipova, mother of Sasha, another child with SMA, also noted that the program should be launched as soon as possible: months.

Will everyone live up to this moment? "

The daughter of Muscovite Elina Leontyeva Masha also suffers from SMA.

Elina is worried that with the transfer of patient treatment to the federal level, the regions will exclude the corresponding costs from their budgets. 

“It is clear that the regions are probably dreaming of putting everything on the federal shoulders, the treatment is very expensive.

We still have the last injection of Spinraza, but what will happen after February is unknown, - she shared with RT.

- Of course, Masha would like to deliver a one-time injection from Zolgensma.

But this cannot yet be done at the expense of the state, the medicine is still undergoing the registration procedure in Russia.

Although here, it seems to me, it would be possible to find a way out, since the drug is needed for health reasons, there are such precedents ”.

In addition, the program does not cover adult patients with SMA, of whom there are more than 200 people in the “SMA Families” foundation alone.

Lada Penkova from the Krasnodar Territory is one of them.

She recalls how she fought for months for her right to Spinraza, and believes that the families of patients will face the same difficulties after the start of the foundation.

“When I went through all these medical commissions, many doctors told me:“ You are 18 years old, Spinraza will not help you, why are we going to spend money on you? ”

Now, I'm afraid it will be even more difficult, because a certain selection was mentioned, and this word can be grabbed, "she told RT.