Will Putin’s ‘wealth tax’ help children with rare diseases?

‘This has never happened in our country’s history’

Olga, do you think the creation of such an organisation will be a qualitative advance in Russian health care? Can the foundation become a significant structure to amend the state of affairs in treating critically ill children?

Of course, the creation of the foundation that, I will stress, will run on the money of the federal budget is an unprecedented decision. This has never happened in our country’s history. I think I won’t be mistaken to say that it almost doesn’t have analogues around the world. I know a similar foundation dealing with rare diseases was created in Poland. But for our country, it is an absolutely new decision. The fact that the president of the country made it inspires certain optimism. He seems to have paid attention to the problem of rare diseases for the first time.

How have rare diseases in Russia been doing until now?

While this work is done now around the world, and those diseases that used to be considered untreatable already have treatment. Yes, medicines for the world of rare diseases are expensive enough, they cost tens of millions of rubles a year for a patient. But in Russia, these diseases aren’t included in the current programmes. Such rare severe diseases have already amounted to around 30 by 2021. And what to do with such patients?

Yes, what to do?

They are entitled to receive medical support only on the grounds of disability in accordance with the old decree of the Russian government No. 890 in 1994. In other words, if a doctor recommended a medicine to the patient for his life support, a region’s Ministry of Health Care must buy it. But in most cases, patients face difficulties — the medicine, in fact, costs millions of rubles, while the regional budget doesn’t factor in so much money. So it turns out that every patient of this kind creates a budget burden, and regions don’t handle it.

This situation became a catalyst for searching for solutions. And three factors overlapped in the case of SMA. Firstly, the treatment is very costly. Secondly, SMA is one of the widespread rare diseases. Not 100 and not 200 people suffer from it across the country but more than a thousand. While it is 10 patients per region on average. It means a region needs up to 400 million rubles to treat such a small group of patients. And in such a system, an inflexible system that doesn’t know how to work with hot-button situations with expensive treatment, there wouldn’t be progress. Ultimately, the third important factor is the activity of civic society. The system of the approach to rare diseases required changes also because patients live on their own, not all of them are united by some communities, they constantly face a huge amount of problems. It is hard for them to exercise their right to treatment.

I hope now patients with the same SMA will be able to receive necessary treatment because earlier this used to happen only after a long-term fight with functionaries

‘Children die, adults die’

But will the creation of Circle of Kindness become such a systematic solution?

Partly. There are prerequisites for being able to address questions that confuse representative of power in this foundation. It is the absence of a registry of patients, not the calculation of necessary public money for all patients, the absence of data on the efficiency of medicines...

And I think that Circle of Kindness can become a good instrument for those diseases that aren’t in the state programme. It can allow assessing the whole 'system' of help to patients with rare diseases. And we can’t wait. Children die, adults die: January ended, while two people already died from SMA over this time. Last year, tens of patients who didn’t live to see some help. I am sure this foundation can collect all data about people who need help and provide it. I hope now patients with the same SMA will be able to receive necessary treatment because earlier this used to happen only after a long-term fight with functionaries.

Will the money of the foundation enough for all patients with rare diseases in Russia?

We can’t say that the creation of Circle of Kindness will solve all problems of children with severe diseases. We understand there are a lot of problems of this kind. Many sore points in our health care system will stay. There are a lot of diseases, while resources are always limited. Time will show how all this will work, the work is just beginning. But it is very important for us how it will go.

‘We don’t know how a region will behave’

At the moment what’s known about the work of the foundation is that in a region the patient will fill in a document reading that the state must give him money for treatment. He will be sent to Circle of Kindness with this document, the final decision will be up to the foundation. How faultless is this approach?

We need such a mechanism so that patients, doctors and regional authorities won’t misunderstand where tasks and duties of pharmaceutical support between them and the foundation separate. There is not a ready answer yet. But I think it will appear soon. And only such an understanding will help the patient not to stay without help. By the way, this is what we see now in many regions: patients turn to functionaries asking for medicines, while the latter say: ‘We have sent your data to Circle of Kindness foundation’. Sorry, but nobody has yet cancelled Russia’s legislation. And while Circle of Kindness hasn’t provided a patient with treatment, the region is in charge of this duty.

When the foundation starts running, we will already understand where patients can hope for some help of the regional budget and where in Circle of Kindness. I don’t think the foundation can meet all commitments of power agencies.

Presidential decrees indicate that regions shouldn’t reduce the amount of help to patients according to current programmes

What is important is that it is created as an additional source of help and can’t duplicate state programmes. Presidential decrees indicate that regions shouldn’t reduce the amount of help to patients according to current programmes. One of the communities of the Ministry of Health Care in social networks even had a petition to regional authorities, like: ‘If you start sending patients only to Circle of Kindness, you wrongly interpret provisions of documents.’ You must continue treating patients, while the foundation must help the patient if the region doesn’t handle its treatment. The task of the foundation is not to solve all problems from the region but create an additional instrument to solve the problem in a place where one’s own possibilities aren’t enough.

Is there a risk that regions won’t be manoeuvrable even if there is Circle of Kindness?

There is a risk. We don’t know how a region will behave — we have 85 regions and 85 different tactics and styles of behaviour. According to our patients’ messages when everybody learnt that the foundation will be created in late 2020, some signals were made by regions like: ‘Wait for Circle of Kindness’. But it is already February, and children still don’t receive treatment, though the court ruled that it is necessary.

I don’t understand what impedes a region now from starting the therapy because we’re talking about little but still citizens. Now some patients are already 17,5 years, and even though Circle of Kindness will start to maintain such children, it will maintain them until they turn 18. It means that such a problem will have to be sold. We really fear that regions won’t behave normally.

Meanwhile, it is important that they pay attention to succession so that children the foundation helps won’t stay without help after they reach the legal age. The number of adults with rare diseases is very big, while they, of course, won’t be provided with medicines through the foundation. Of course, we hope very much that after the children go to Circle of Kindness, regions will be ready to help adults, but there is no guarantee. And we genuinely fear that they will take a wait-and-see approach regarding adults.

The perfect picture I would like to see is when a patient appears, therapy is immediately prescribed

‘The patient should understand the mechanisms like a road map’

What should you do with those who turn 18? To create a new foundation for them?

Perhaps, we should move towards new state programmes in this issue. But the perfect picture I would like to see is when a patient appears, therapy is immediately prescribed. With the beginning of operation of Circle of Kindness when at least children will receive help with the help of federal money, we would like adults to receive help from a region. And then might the federal budget help them. So succession will be provided. A region started to work with a patient, Circle of Kindness then picked him up and treats him until turning 18 and hands him over to the region again.

The important part of my vision of the situation is that regions should calculate in advance how much federal money a patient needs. By the way, both the Ministry of Health Care and the Ministry of Finance often stress that regions have the possibility of asking for additional money from the federal budget explaining the feasibility of subsidies. Unfortunately, regions aren’t always so concerned.

How will we determine the effectiveness and authority of the foundation? Admit that we don’t have a lot of public institutions we trust.

To understand that Circle of Kindness is an operating structure, it will be important to evaluate if its activity complies with several principles.

Firstly, the foundation’s decision-making must be transparent.

The second condition is demonstrated publicity (I don’t mean now medical privacy or personal data). And I see that they work on this issue — the website of the foundation has already been launched, Circle of Kindness is present in social networks. If the decisions the foundation will make are published with an explanation in the public domain, this will inspire people confidence.

Another important moment is not to duplicate f existing state programmes. In other words, there must be provided clarity and accuracy of all mechanisms of the organisation’s activity. If you are a patient, you should clearly understand where you should go with your problem — to his region or somewhere else. The patient or his parents should understand the mechanisms that are now created in the foundation like a road map — what to do in a situation, how to receive treatment, the deadlines and so on.

If we see it all, we will have all the foundation to assume that the instrument works clearly, transparently, without those things we like to suspect in the activity of public structures.

The main expectation in our patients’ SMA community now is that Circle of Kindness will start working as fast as possible so that our patients will stop suffering and receive long-awaited treatment

‘The presence of both Chulpan Khamatova and Konstantin Khabensky increases the trust in the foundation’s actions’

How will the participation of authoritative people in society help to solve problems of children with rare diseases? We know how much the trust in both Khabensky and Khamatova has risen among Russians in the last years.

The Supervisory Board of the foundation, first of all, must oversee that the principles of its activity are followed. I think both the people and the principles matter. Nevertheless, the participation of people who are famous for their actions in charity is very important. They can be personally responsible for decisions and activity of the foundation, purity and transparency.

And of course, the presence of both Chulpan Khamatova and Konstantin Khabensky increases the trust in the foundation’s actions. Again, let’s wait, let’s be patient and hope that Circle of Kindness will work well. I think there is sense in evaluating the foundation and its managers in a year, at least in six months. It is anyway not so easy to recommend yourself within a short time. The most important thing for all not indifferent people now is to support the initiative and see how it will run. Because those people who are ready to do something for patients really joined the foundation, and feedback is very important.

I already see former Mayor of Yekaterinburg Yevgeny Roizman who is famous for his charity work too support Circle of Kindness on the radio. He expressed confidence that the foundation can save a lot of lives.

Maybe, and the main expectation in our patients’ SMA community now is that Circle of Kindness will start working as fast as possible so that our patients will stop suffering and receive long-awaited treatment. Then, of course, we will have some new desires, ideas, proposals for the same Circle of Kindness.

But do you agree with Roizman that if money is quickly sent to children with SMA, almost all of them will be saved?

Yes, of course.

In my opinion, money should be raised only when it is impossible to get money for medicines or surgery from the public budget or when it has to be asked for for too long like it often happens in Russia

‘The list of diseases hasn’t yet been approved, the foundation is open to proposals’

Circle of Kindness will work only with a certain list of diseases. What to do with the rest, the same cystic fibrosis?

As far as I am concerned, the list of diseases hasn’t yet been approved. As I understand, the foundation is open to proposals. It just needs to be given time, let’s say, it was registered only yesterday. It will have to deal with one disease, another one step by step... And I am urging citizens and organisations to make proposals to the foundation not accidentally — it is the most correct way to draw the attention of Circle of Kindness functionaries to a region’s problems.

What do you think about raising money for ill children on TV programmes by sending SMS? On the one hand, many are ready to help ill children’s families this way. On the other hand, when reports on functionaries’ luxurious life have appeared recently, people wonder why society raises money for ill children, where the money of the state is. And now, if Circle of Kindness works and fundraising through TV channels goes on, will the bewilderment go up? What to do in this issue? To collect money in the air?

We don’t yet completely understand what exactly Circle of Kindness will cover. Moreover, any fundraising in the TV air must be explained and justified, first of all, from a medical perspective. In my opinion, money should be raised only when it is impossible to get money for medicines or surgery from the public budget or when it has to be asked for for too long like it often happens in Russia, while a child needs to get the money raised urgently, otherwise, he won’t live or his state will get worse. In every case, it is necessary to explain to the TV audience why this money is raised. According to practice, I can’t reproach parents’ intention to raise money. It is a gesture of despair among many because they see a child is dying in their arms and it is unclear if the state will help them. The majority of money is raised precisely out of parents’ despair.