"Filling a fire is good, but there is not enough money for everyone"

Putin raised taxes to help children with rare diseases. We asked the philanthropists who support them, whether this will help

On June 23, Vladimir Putin announced that Russia will increase income tax from 13 to 15% - but only “for the rich”, that is, for those whose annual income exceeds five million rubles. Money received from a partial increase in personal income tax - 60 billion rubles a year - will go to the treatment of children with orphan (rare) diseases, the President of Russia announced. Meduzacare asked philanthropists who help children like they evaluate this decision, whether the declared amount will have enough and what will happen to adults with rare diseases.

The article that you read is part of our Meduzacare philanthropists support program. In June 2020, it is dedicated to poverty during the pandemic. All materials can be read on a special screen .

Olga Hermanenko, Head of the Fund for Assistance to People with Spinal muscle atrophy "Family SMA"

I have not met in any country in the world that the president decides in the form of increasing taxation for issues related to orphan diseases. This is probably a world premiere for such decisions. Today, the situation with the drug provision of patients with orphan diseases is quite complicated. We are talking about about 30 orphan diseases, the treatment of which is not included in any interim lists .

Judging by yesterday's performance, the agenda is also on the agenda of our patients [people with spinal muscle atrophy], because now it is the most common group among orphan diseases that are not included in any lists, but having pathogenetic therapy , which with greater and large labor is provided by units of those in need. The rest are forced to pass through the circles of bureaucratic hell. Parental despair is already just at the limit.

What we heard yesterday is evaluated as a decision made from above, which we have been waiting for a long time. Every time you go to the negotiations, communicate with officials, you hear: “We are ready, only we need to understand where and from what source and whether budget funds will allocate so that we can really move on.” What the president said yesterday is a very positive step in the plan of where the money will be allocated, how this issue is planned to be resolved. For our patients, this means that we have found a channel that will attract a certain amount of financing, which, according to calculations, is necessary to solve the problems of patients with rare diseases. We are very waiting for the following steps that will allow you to understand how these funds will be brought to patients.

The new system has been introduced since 2021, respectively, it will be another six months, when the situation will remain intense, because Orphan patients and patients with SMA cannot wait. Someone may not live. Therefore, for these six months, while we are waiting for some new system, you also need to understand what to do, and, possibly, give the appropriate commands, maybe to the regions. Which could start [treatment], not to pull, not wait until the Federation takes, but begin to treat these patients, realizing that they will be ensured in the future at the expense of federal financing.

The president mentioned the children in his speech, several times emphasized that “children with orphan diseases”, “gathering for children”, “support for children”, but I would like to notice that among seriously ill people, people with orphan diseases, spinal muscle atrophy in particular, there are a large number of adults who experience the same problems, and they need exactly the same help as the children's population. More than 20% of people with SMA who now live in the country are adults. Therefore, I would very much like to hope that we will not have this demarcation: today I am 17 years old and they are being treated, and tomorrow I am 18 and I am not treated. Maybe this was done so that a difficult decision to raise taxes for a certain category of citizens was perceived better than the people. We always somehow treat children in a special way.

Maya Sonina, Director of the Charity Fund for Assistance to Patient Cycids "Oxygen"

In fairness, it would be better to progressively increase taxes, not fixed by these plus two percent. Because the income can be five million and five billion. In addition, the expenses of our taxes are very opaque. Where [the treatment of orphan diseases] will be reflected and in what form it is incomprehensible.

They expect to collect about 60 billion rubles a year, but even if you distribute this amount according to Orphanniki, at least for children - this will be about anything. Because you need to change the entire system, all medicine in the root. You need much more money. If the medical staff is not interested in financially, no one will go to study additionally, there is no incentive. And what will this money be spent on? The generics , as a rule, are not effective?

We are talking about children again. As a rule, if a child with a severe orphan disease manages to survive until adulthood, both the state and society forget about him. Here they reached the person to 18. What next?

Alexandra Babkin, Director for Social Projects at Mail.Ru Group, head of the Doba Mail.ru project

This decision cannot be evaluated at all as successful or unsuccessful. This is an obvious tool for the president. The point is that the audience - our people - received several completely clear signals from the president: seriously ill children will help due to the fact that funds from the introduction of a progressive tax scale will appear. If it is translated into a very simple language: more wealthy people will be taken away part of the funds and these funds will be enough to pay for treatment for children with rare diseases.

The truth is that, firstly, this money is not enough for all children with rare diseases, it can hardly be enough for children with SMA, and that is not a fact. Secondly, the president noted that the assistance of funds is not needed here, but a systemic assistance. Thus, the opposition of the actions of charitable organizations - and the real system, which the state symbolizes in this case, occurred. But why does the state lose the idea that among people with rare diseases [is there] not only children? That is, all people over 18 years of age will not receive any help. They, apparently, will still have to raise funds with charitable organizations.

In this topic - even if we take only the segment of orphan diseases - a huge amount of work that should be carried out. Moreover, there are a significant number of people with diseases that are not yet recognized by our state orfannaya, and, accordingly, these people cannot expect that the funds received from the introduction of a progressive scale will be directed to help them too. That is, it is such a local fire extinguishing, but this cannot be called a systematic solution that will help a significant number of people or all children with orphan diseases.

It is not clear why the ordinary Russian generally helps charitable foundations and help children who need high -tech treatment, children with rare diseases, if the problem would be solved as if as if in a systematic way. It is very disturbing me.

Irina Bakradze, managing director of the Fund for Assistance to Children and Adults with Violations of the Sunflower Immunity

I will leave specialists to comment on the advantages of a tax or budgetary mechanism for financing children's treatment. In my opinion, the most important thing in the initiative announced by the President is a change in the philosophy of the approach to financing medical care in principle. The state recognized that free medicine has a limit, and all social initiatives over it should be additionally paid for taxpayers. In fact, it has still happened so far - not at the expense of increasing taxes, but at the expense of own funds or voluntary charitable donations of citizens.

Of course, this measure is an important step forward. I hope that this is the beginning of a large path towards solving patient problems not only with orphan diseases, but also the creation of the system, when, regardless of the diagnosis, each patient will be provided with the necessary therapy.

And, of course, the most important question remains - how the state will be able to effectively spend additional funds, how much the mechanisms of routing patients, interregional distribution, the formation of reserves, auctions and many other technical issues that are of paramount importance in the exercise of patient rights to preferential drug security will be worked out.

Mitya Aleshkovsky, Chairman of the Council of the Charitable Fund "Need help"

In the help of children with orphan diseases, there is a philosophical aspect, but there is a practical one. Of course, there are more children with orphan diseases than adults. But this is the result of the fact that children with orphan diseases simply do not live up to 18 years. But if we begin to treat [them] and increase their life expectancy, then people over 18 years old with orphan diseases will be much more. But the current system does not provide money for the purchase of medicines over 18 years of age. Only the children said, the president said. We have more than 250 orphan diseases in the list. There is only enough money for children who are sick with SMA [right] now. But there is not enough for everyone else - who will grow up, or with another illness, or older than 18 years.

But there is a philosophical problem, which is that actually every citizen is worthy of his life to be considered the highest value to fight for him. But it turns out that we are only fighting for those who are sorry, or those who support public opinion, and so on. This is a global problem for Russia, because in Russia a person’s life in the public consciousness costs nothing. So we fight for the old people, for veterans, for children. And just for a person - no. And this leads to such solutions that are positive, because some life will be saved, but ineffective and not systemic. A system that operates in the interests of citizens should be built. Not the old people, not children, but citizens - any person who is faced with a problem. Now she works poorly.

The same children with orphan diseases, with SMA, are already prescribed in the law so that regional budgets pay for them this treatment. But this does not happen. We have to sue, you have to prove. Sometimes the Investigative Committee forced regional budgets to pay for treatment for children. This is a struggle every time. Since in this struggle the score is on the days, this struggle is played. [This year] a child who simply did not wait for treatment died in Krasnoyarsk. His brother survived - he seemed to be given a medicine.

We see that the current system, which is controlled exclusively by the state authority, works poorly. Pouring a fire with money is good from the point of view of thousands of life, but many thousands of people will remain out of work, because there will not be enough money for everyone. This is not a system solution. A system solution is to update the budget every year. Not 60 billion rubles this year. To send to the aid of children with orphan diseases is not a percentage of personal income tax, but exactly as much as necessary. For example, we know for sure that when the spinraz drug is purchased by wholesale, the manufacturer makes huge discounts. But so far no one has addressed them to provide these discounts, has not purchased wholesale. We are always talking about one -time purchases.

Recorded by Natasha Fedorenko