"Doctors are forced to lie"

Dr. Kurmyshkin - about what Russia can and should do for its children, patients

Just in Rostov, Kurmyshkin went with the mother of the sick child to the clinic to the medical commission (VK). We met before this with a neurologist. “A good woman, really wants to help us, but is afraid of the authorities,” says Kurmyshkin. - As a result, it was crumbling for a long time, then reports: “You need to turn to one philanthropist about this. He will help you. He helps everyone with the SMA, they write about him in our closed chat of Rostov neurologists. He finds money for all patients with the SMA in the country, organized a special fund to help them. I don’t remember his last name, now I will write to colleagues and send you.” After a while, he really sends the data of this person. Here, look. "

Kurmyshkin shows the correspondence sent to him in the messenger, the dialogue in the chat of the patient and the Rostov neurologist: “Maybe tell me at what level to solve the problem with the receipt of this drug to a disabled child, if this is generally possible?” And the answers: “In Russia, only this person is subject to this person. This is Kurmyshkin. "

The doctor from St. Petersburg over the past six months suddenly became one of the most influential people in the Russian Federation. He is not only light in the window of hundreds of families with children with disabilities, he almost hung over forty regions over the heads of governors and ministers of the ax. Okay, let Damocles Sword. The point is not only in the talents of the doctor and his responsiveness for pain. The case is state hypocrisy.

According to the law, the state should treat children, no matter how expensive it does not cost it. In reality, the central government from children with SM (spinal muscle atrophy) turned away, and the poor provincial Russia can allow such expenses on its children either, or can, but with an inhuman breakdown.

That is, the authorities are not able to fulfill the law and the requirement of the court. The provincial bosses remain extreme, and if this is not a crisis of federal and inter -budget relations, then what?

Expert card
Alexander Kurmyshkin. Neurologist, Ph.D., specialization - rare genetic diseases, head of the BF for helping families with SMA. The traveling (all of Russia) doctor working in hospitals and courts, in VK and during investigative actions.

- How many vessels have passed, what practice?

- On June 8, two more vessels with immediate execution won - Krasnodar and Perm. I have no statistics on all ships of this kind, but only our fund has 57 victories for six months from the date of entry of Spinraza into Russia. By the end of the summer, I predict 100. Everything is with immediate execution. The courts go without us. In Tomsk, two in Penza, in Stavropol (and there they already reached the ECHR and won), in Khabarovsk. And, of course, all these courts turn into a farce. Such an obsessive nightmare sleep, one plot every night.

What prevents at the federal level to see these results and draw conclusions?

1. All the requirements of each patient with the lump are legal. This shows judicial practice.

2. Further courts are only formality. But they regularly take a lot of time, money and nerves in all sides. And most importantly - they delay the treatment, and children irrevocably lose their life functions.

3. At the same time, the President does not get tired of emphasizing the priority of children's interests.

So why continue this circus? Where is the reaction of the Federal Ministry of Health?

- And if you were the Minister of Health? In Russia, a thousand children with SMA. In Russia, coppers go to medicine, and all always, so manned, is not enough. There is an opinion that children with the SMA can take funding from other children whose diseases are cured - there are orders of magnitude more. Despite the fact that doubts are also expressed in the effectiveness of drugs against SMA.

- Two rescuing drugs in the world so far, and they really stop the development of the disease. In Russia, only Spinraz is registered, but Zulgensma is also a full -fledged participant in the clinical process of assistance to children with SMA, more than 10 children are treated or prepared for treatment.

Ten children are a lot, because the price of one injection of the drug is $ 1.6 million.

At first glance, it is insanely expensive. In fact, this is the most inexpensive treatment of SMA: to stop the death of motor -neurons of the spinal cord, only one injection in life is required. And the life of this patient is supposed (as a result of such a treatment) as long as the national average: at least 70 years. It turns out that the cost of the year of life of such a patient is $ 22,857, or 1.6 million rubles.

For an orphan disease, this is inexpensive and completely acceptable for the Russian budget. If all 1000 patients suffering from this disease received this treatment on time, then the total expenses for their treatment would be only 1.6 billion rubles a year.

This is a reasonable payment for the cure of all patients with SMA.

Unfortunately, Zulgensm was invented recently, and the vast majority of patients missed the therapeutic period of the possibility of its use - up to two years of life. But she could help at least a hundred children with SMA up to two years in Russia now, efficiently saving huge amounts on annual maintenance of their health with the only medicine registered in the Russian Federation for the treatment of SMA - spinras, which after reaching the necessary concentration of the patient requires 24 million rubles a year.

Feel the difference: 1.6 million and 24 million? This is higher than the annual price at Zulgensm by exactly 15 times, or 22.4 million in each year.

That is, the treatment of a hundred children from the SMA would cost the state of 160 million annually with the use of Zulgensma, and not in 2.4 billion, as the use of Spinraza would require. Savings - 2.2 billion per year.

What could be expected from the stringing Minister of Health, who would decide to save all a hundred children to two years old from a terrible life and no less terrible death and at the same time would like to do this with the lowest costs?

Right. He would quickly register Zulgensma, provide this medicine with all the kids with the SMA, and everyone who is older would buy Spinraz. After that, he would spend very small (compared to the cost of treatment) money for prenatal diagnosis of SMO in all maternity hospitals and ensured that children with such a diagnosis would cease to be born altogether! And the need for expenses for their treatment would have disappeared completely over time! But this is an honest, reasonable and competent minister.

It's already funny, right?

“Well, what is the minister that we have?”

- You will be surprised, but he solved the problem and treatment, and saving is much more radical.

2. He refused to treat patients with SMA for his money at all, transferring this duty to the regions. In essence, this means that he refused treatment there, because there are no such money in regional budgets. For the treatment of 22 patients with SMA, the Altai Territory should spend 1.1 billion rubles in the first year. And the entire medicinal budget of the region for 35,000 regional beneficiaries is 350 million rubles a year. On everyone!

1. It does not record a much more profitable and no less effective drug - Zolgensmu, and patients are looking for money for it through appeals in the media.

2. And finally, instead of choosing between two drugs known and used in the world, it is preparing to register a new experimental drug, and still with an unknown price that has not yet been recognized in any other state. For this, the Ministry of Health is already planting 250 children and adults on it, allowing the manufacturer to distribute exactly so many annual doses of the drug - as a continuation of its clinical examination.

At first glance, the free distribution of elephants is a good deed. How! 250 patients will begin to be treated for free tomorrow during the year! This will save 2.3 billion rubles per year!

Will not save.

Firstly, because no one was going to treat these 250 unfortunates next year. At all. The state budget on them has not been allocated from the state budget. Where is the savings?

Through three times it is much worse. In a year, these 250 patients will cease to treat for free. And they rightly demand from the state that proclaims in the Constitution an unconditional priority of the interests of children, continuation. And they will certainly receive it - most likely, after the fight in the courts. Yes, even if not - if the state is generous and begins to purchase for them this medicine voluntarily. But for what price? That's right - for the one that the manufacturer will declare. Without any trade.

Because you can bargain only before the purchase. If you have a choice. Even if a brutal choice: to treat or not to treat at all (as, in fact, now is happening).

That is how European states received enormous discounts of 60% (!) From the initial proposal “Spinraza”. They negotiated before registration and purchase of the drug, and not after it.

In general, the practice of unjustified registration of super -expensive drugs in the Russian Federation without any preliminary negotiations on discounts is a common thing in the Ministry of Health of the Russian Federation. No one asks the Ministry of Finance if he has several extra billions. No one asks the governors if there are several hundred million a year in the regional budgets, because the federal authorities are not going to spend money. No one even calculates the annual need for this medicine to understand: what discount from the manufacturer can be required for such volumes?

Because this discount, most likely, is received from this manufacturer, the Ministry of Health clerk. Cash. And the manufacturer, of course, holds the highest of possible prices.

In addition, he chooses only one supplier and allows him to make any high margin of his medicine - it is not included in the list of vital drugs, although, in essence, they are. And this only partner makes a 100%margin.

I was not mistaken. He makes a two -time trading margin on and so the most expensive drug in the world and holds it. Because no one, besides this supplier, has the right to have this medicine in the warehouse. The medicine is really good. Life. Patients go to court and prove the right to treat them at the expense of the state. And the state purchases this medicine - for a double margin at the highest price. Here is such a simple business. It continues in Russia for the tenth year.

- Explain what drugs we are talking about now.

- This is a long list of orphan drugs. Only two examples. Soliris: the annual price of treatment in the global market $ 460,000. From 2012 to 2016, the regions of the Russian Federation were purchased by courts of courts for $ 1 million per child. Elapraza: at a price of $ 430,000, they purchased for $ 1 million from 2011 to 2016. Then they were included in the Zhvlnp list. And before that, five years - 100% margin of the only supplier.

I wrote about this in the UK. Three years (a year a year) they call me for interrogation. They say: it is clear that the matter is dark. And all. In relation to Spinraza, I conducted a special investigation before I took up this project - so as not to get into a fraudulent scheme. Spinraz is supplied by 15 federal suppliers, almost all the big players. I swore a world price for the year of treatment in the USA and the EU, compared the price in the Russian Federation, received 18% of the margin. Breeding.

And the producer of Spinraza is ready to discuss a significant discount - not even for all 1000 patients, but at least for these 250, who are now distributed anywhere, not yet a registered drug.

But no, the Ministry of Health goes to the experiment: it takes free without negotiations about the price and without even having an idea about it - because it simply does not. A year later, these patients will inevitably force this medicine without any negotiations.

And this is when Russia already has a registered medicine. And when, in fact, the whole world is already starting to use another medicine, which is 15 times cheaper in annual calculus than Spinraz.

So clerks from the Ministry of Health put cancer (sorry my French, but this is so) all regional budgets. And the regions are forced by holy or by crook to refuse their deadly ill children in treatment. More often - almost always! - Unrighteous.

The governor sets the task for the regional minister, the one to the head physicians and chief specialists, they scare the heads of departments and ordinary doctors.

“If the patient receives the conclusion of VK about the vital necessity of“ spinras ”, you will all be dismissed!”

Because the patient with the decision of the VK will inevitably go to court and will surely win it. And the region will be obliged to purchase it immediately!

And they really dismiss. And it turns out that the Ministry of Health of the Russian Federation is good: it quickly registers any medicine, regardless of whether there is money in Russia, and regional Ministry of Health is bad. They refuse patients in treatment. Very convenient. And very profitable, notice. Some people from this very Ministry of Health of the Russian Federation.

Parents of Orphan patients or they themselves force regional VK to give a fair opinion, after which they go to court and win it.

- While the court is the only way to force the state to do what it should?

- Yes. And we provide the main assistance not even in the courts, but in the preparation of medical documents for them. This is the most difficult, but also the most effective. The court with correctly prepared medical reports we win 100% of our claims. I must probably emphasize that we are completely independent of anyone except our philanthropists. Ordinary people donate small amounts to our fund, but this is quite enough to help the patient achieve life treatment from the state. If we followed the path of other funds that declare fees for the most expensive medicines, we, of course, would never be able to help 57 patients.

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In order to begin to work money collected to purchase the medicine itself, it is necessary for a start to get at least 30 million rubles for the first four loading injections. For the amount of 10 times less than our fund, 165 patients now help. Our main expenses are on trips and payment of experts. The doctors of our fund go to each VK personally, having in their hands a power of attorney from the patient himself or his parents, and force doctors to write the truth in the field.

The judges are not tempted in medical matters and by default trust state officials and doctors sent to the Ministry of Health.

If there is no trusted doctor at the trial, then representatives of the Ministry of Health inform the judge a bunch of false information about the disease, about the medicine, and about everything else.

I don't exaggerate. And after the winning of each court, an appeal is now waiting for us. And after a loss of appeal, regional Ministry of Health began to initiate a cassation. Without legal and medical support, patients who even managed to win the first court themselves inevitably play further. This happened in Blagoveshchensk, and we now help these mothers (four) to “scoop up” from the appeals they lost. The same in Ulyanovsk.

- How do they go now?

- In Vologda on VK, the head of the clinic, who was angry with our questions, called two policemen - to withdraw me and the patient’s mother from her office. It ended funny: I explained to the sergeant that the problem is that we are not given an answer to our four questions - neither positive nor negative. At all, they do not want to answer our questions and drive out. He showed him these questions. The sergeant read them and asked the head: "So?" She began again: "They are not entitled, but I have no competence." The sergeant rightly remarked:

“Well, write that you have no competence. Or answer. "

As a result, VK took place as part of five doctors, my mother and I and two police officers.

Really. The police forced the chairman to answer all the questions! Trash and sur. In the end, I asked the police: "There are questions to me?" Sergeant: "Go about your business, and I want to ask doctors questions about their children."

We left, and they stayed.

It’s not even sad that the decision is slowing for doctors on vital issues in relation to children. It is terrible that doctors are forced to lie.

We then win all this in the courts and have actual evidence that their objections were far -fetched.

And what is done without us and with other patients?

And one more thing must be said. Unfortunately, not only doctors and administrators are cheating, but also patients themselves with SMA. We found an active continuation of monetary fees for Spinraise after winning ships with immediate execution (with our help). There are already more than 10 of them, these are only those whom we have identified.

It turns out that the patient decided to leave the feeder. All these fees are a very slippery topic. Yes, they often help, but this is happening. In addition, I am sure that our model of assistance to such patients, on the one hand, is more effective, and on the other, it is more transparent and open for any checks.

-How do you assess the initiative of Deputy Prime Minister Golikova, approved by the president? A fund replenished by budgets and a “socially oriented business”?

- I have three comments.

1. Why create a SMA Assistance Fund, if there are already two such funds? Each of them consists completely only of the patients themselves or their parents.

2. The main question is - where did the money come from? - Hung. What is this involving a socially oriented business? How does financial liability share between regions and the federation? It is incomprehensible.

3. There is a well -functioning system of the federal list of rare diseases financed directly by the Ministry of Health of the Russian Federation. Why is he bad?

I am sure that our activity will force the authorities to solve this issue faster. The regions receive a tremendous load on their medicinal budget with each lost court. Я планирую иметь в Калужской области 6 выигранных судов, в Красноярском крае — 9, в Краснодарском — 20, в Москве — 60, в Омске — 6, на Алтае — 12. Ну и так далее. Одно это заставит губернаторов этих регионов ставить в Федерации вопрос ребром, потому что это съест до 90% их запланированных на год лекарственных бюджетов. По-другому, по-хорошему, не получится. А новый фонд мне видится в качестве стиральной машины, вот и все его функции.