About the heroes of Russia and their nerves

The necessary notification is for everyone who is involved in the history of children with SMA and is now excited in vain

The story from the "new" and the SMA from a craft point of view, of course, is unprofessional: the newspaper has other functions. But the “new” is published in Russia and for Russia, and here everything is not about the craft here, and the newspaper consciously goes to all professional risks. For what? Certainly not for the sake of parental thanks in the mail, and when they were replaced by curses, this could not affect our current work or plans.

Typical letter:

Another disappointment

“You instilled hope in us, everyone is looking forward to every report about SMA, and this time they also waited. What happened? Why didn't the stars come together? Or not all topics can be touched on? Or even the "New Gazeta" is not the same truth -to -end as it seemed originally? We, as before, remain with our misfortune one on one and our trusted doctor A. Kurmyshkin we will help us? And you, giving us hope, wash your hands? Another disappointment in the Circle of the SMA. Disappointment, which are already a lot. ”

Kurmyshkin himself in a letter quotes Galich:

Letter Kurmyshkin

“Smell, you will get into the executioners. Everything is clear: you are not to blame for anything. They called you, they pressed you, they threatened you. Maybe you even paid you. As well as everyone in this conveying. We understand that all these people, condemning children to death, are generally cute and harmless-they just told them that, and they could not do otherwise. And so - they are all kind and fluffy.

It turned out that you are the same.

The everyday business, I do not blame you.

Just don't dissolve your peacock feathers anymore and do not be dressed in defenders of justice. Work out a contract for the promotion of Zulgensma further.

Ask your editor -in -chief not to touch the topic of SMA. All. Finished.

Without respect,

Alexander.

Hello borders. She fucked you. "

Anger about the “Zolgensma”, presumably, is explained by the fact that the editors collected money for the introduction of this medicine, and not “spinras”. But here the position of the newspaper is simple:

“Spinraz” is obliged to provide children with the state, and if the parents are not silent, go to the doctors, to court, they seek medicine.

The newspaper supports them and regularly writes about it. Zulgensma is not registered in Russia, and without the help of civil society, patients cannot be seen. And “Zulgensm” is introduced once, which is ideal for applying joint efforts - after all, people the next day will no longer remember who had to be saved. Nobody will ever collect money in the “spinras”, which needs to be entered all your life, money in the world. Here you need the state.

And the second. As for the curb mafia. The note that was about and which “did not come out”, which caused a wave of indignation, actually reached No. 40 (“Do you know how Jesus Christ died?”)-when the verification of the facts ended and when the Muscovites really dared to go to the courts (three lawsuits reached, four were sent by Russian Post and while on the way).

The newspaper has its own schedule for the release of materials, its difficulties, an internal rich life is all uninteresting,

But we do not let our themes and our heroes go and track.

And by the way, Moscow decided not to buy borders.

Yes, and about the requests for the editor -in -chief: Kurmyshkin, despite all his greatness and merits (this is not an irony, but a statement of facts), does not have a monopoly on the SMA, and the doctor - Doktorovo, and the main care - Glavredovo.

All who are headed in this story, everyone who sends now curses, then tearful gratitude, must apparently reassure: of course, someone's nerves mean nothing against the background of sick children,

Both the newspaper will support both parents and Dr. Kurmyshkin.

He resumed communication and cooperation with us, we receive documents from him. We will do everything that is in the power of the newspaper.

Kurmyshkin, no doubt, the hero of modern Russia. The traveling doctor, today he is in Kaluga, tomorrow in the Boguchans on the shores of the hangars, the day after tomorrow flies to Yakutsk, then Kazan, Chelyabinsk, Krasnoyarsk, etc. He is in hospitals and courts, in medical commissions and during investigative actions. He forces the state to fulfill its duties and fulfill its laws. On duty in Russia. Not his fault that the medicines are so expensive.

“There are reasonable reasons in the high cost of orphan drugs-it is necessary to support scientific research, but there is, of course, the corruption component,” says Kurmyshkin and gives an example the most expensive drug from 2012 to 2015 in the world. The Russian distributor screwed another one hundred percent on him. The year of treatment of the patient, who cost the United States and the EU in $ 500 thousand, rose at $ 1 million to Russian healthcare-after my public accusation of conspiracy-this at the conference on Orphan diseases in Krasnoyarsk-the owner of the supplier’s company called me a “traitor”, nevertheless, the drug was later introduced to the List of ZhVNLP, which forbids to make such an excise. By that time, only the total trading margin of the company amounted to $ 1 billion. ”

And what? Do not treat children if someone earns on them?

And why do these amounts paralyze the will of officials? Do they pay from their pocket?

Officials are obliged to fulfill laws.

On March 13, “New” published a typical claim to the court “On the obligation to provide a medicinal drug at the expense of budget funds”. Now, in order to complete the road map for parents of children with SMA, we publish a sample application to the regional children's hospital on the conduct of the medical commission (VK) in relation to the patient with SMA. You need to start with this. In the regions (Kaluga, Krasnoyarsk) they are already purchasing a medicine without court - at the request of parents and the word of doctors.

Sample of the appeal to the regional hospital on the conduct of VK
Deputy chief doctor on a medical unit
regional children's clinical hospital
From (degree of kinship) _
Acting in the interests
child -disabled _
F.I.O. , date of birth

Statement.

Dear (Aya) _ F.I.O.

I ask you in accordance with Article 48 of the Federal Law number 323 - Federal Law "On the Basics of Protection of the Health of Citizens in the Russian Federation" to hold a medical commission against the patient _ born _

I ask in writing to provide me with a decision of VK on the following issues:

1) Does the patient have a disease “spinal muscle atrophy (SMA) _ type”?

2) Does the patient have a continuously flaunting negative dynamics of symptoms of the damage to the nervous system, which is not amenable to any methods
treatment?

3) I ask you to confirm that at present, VK members are not known for drugs registered in the Russian Federation that could stop further deterioration in the patient’s condition, except for the drug Spinraz.

4) I ask the VK members to confirm that the Spinraz is currently the only drug that can help the patient _ (full name) according to life indications.

If members of the VK do not agree with any paragraph, I ask you to record this opinion in writing and reflect it in the decision of the medical commission indicating the names of the commission members who expressed this disagreement.
According to Article 48 of the Federal Law number 323, I ask permission to attend VK, make proposals, ask members of the commission questions and receive answers on the merits.

I put a copy of the federal VK from (date) to the application
Due to the extremely low mobility, due to the need for constant caring for a disabled child, I ask you to notify me in advance about the date of the VK, for 3-5 calendar days, by phone _ and e-mail , and to coordinate the date and time of VK, which are mutually convenient for you and me.

Sincerely _ (full name), date, signature.

Today, Kurmyshkin represents the interests of patients in 18 civil matters. This is a lot. Listen to the doctors:

Alexander Kurmyshkin

Neurologist, Ph.D., a specialist in rare genetic diseases, defends the interests of Russian patients with SMA

- The main problem is the proper preparation of medical documentation. There are thousands of tricks, and one wrong word destroys all the patient's rights to expensive treatment. Both doctors and administrators know about this.

90% of my time is spent on remaking the decisions of VK or to their organization, for which I personally come to each meeting both to the region and federal hospitals.

I am trying to attract associates for my work-neurologists with experience and degree-precisely for a medical examination, but this is very difficult. Doctors are intimidated, they have something to lose.

One of my good friend - the associate professor of the Department of Nervous Diseases - half a year ago spoke in one region an expert on the sensational case of patients with rare diseases. She simply gave explanations to the court about the essence of the disease and confirmed the vital need for medicine.

The next day, the rector called her, deprived half of the bet and said that another such performance - and the second half would be lost.

And the federal doctors, whom we invite to the courts, refuse - are afraid to lose their jobs.

If any of the doctors through the “new” responds to help us, we will be grateful. Once again: we need neurologists with experience and a degree to perform in regional courts as specialists.