"Nobody performed unlawful actions"

How Voronezh security forces and officials left to die a girl with a rare disease

The other day, a resident of Voronezh Marina Nikonova received a letter from the regional department of the Investigative Committee (SK) of Russia. It contained a refusal to institute criminal proceedings against local officials who refused to provide the daughter of Marina with vital medicines. The one -year -old Masha Fedotkina has spinal muscle atrophy (SMA). This is a rare genetic disease, the treatment of which was too expensive for our state. "New" tells the story of how the Voronezh security officials and officials left Masha slowly to die in their own eyes and the eyes of her parents.

To the information of Roszdravnadzor

“The disease of your child does not belong to the list of life -threatening and chronic progressive rare (orphan) diseases leading to a reduction in the life expectancy of citizens or their disability, approved by the Decree of the Government of the Russian Federation No. 403,” the acting head of the control department of state programs in the field of healthcare Georgy Petrochenkov.

According to his card on the website of the Federal Service, Petrochenkov was awarded the Certificate of Honor of the Ministry of Health of Russia and the badge “Excellence in Health”. True, these honors and differences did not prevent the official from putting his signature under the refusable document, apparently, not particularly delving into the essence of the problem. Therefore, especially for Petrochenkov and his colleagues from Roszdravnadzor, we explain.

Spinal muscle atrophy is a rare genetic neuromuscular disease. Contrary to the statement of officials, it is progressive. First, the patient atrophy atrophy, then the muscles responsible for swallowing and breathing are weakening. At the same time, the intelligence of people with a lump is absolutely preserved. They die from suffocation, being in full consciousness.

Patients with the most severe form of illness, like Masha Fedotkina, do not live up to two years without treatment.

SMA really does not have a list in Roszdravnadzor. One of the requirements for inclusion in this list is the possibility of pathogenetic treatment and the presence of a drug registered in Russia. The list was approved by the Government in 2012, when the drugs for the treatment of smell did not exist yet, and the disease was considered incurable. The first medicine - Spinraz from Biogen - appeared only in 2016, and in Russia it was registered even in last August.

That is why there is no grease in the list of orphan diseases.

True, even if he had been included there, the authorities would have found a dozen more reasons to refuse the purchase of expensive medicines ( Spinraza injections costs 125 thousand dollars - more than 9 million rubles at the current rate of the Central Bank ; injections must be done all your life - E. K. ), laid down according to the law.

As the Office of the Investigative Committee in the Voronezh Region did.

To the information of investigators

At the end of March, the senior investigator Filippov refused to start a criminal case of negligence (part 1 of article 293 of the Criminal Code) against officials of the Government of the Voronezh Region and the local department of health "due to the lack of an event of a crime." During the check, she found that

The officials did not have a “real opportunity” to provide Masha Fedotkin with the medicine, respectively, and no one performed unlawful actions. ”

As evidence of this very “possibility”, Filippova referred to the fact that “spinraz” was not included in the standards for the provision of medical care and clinical recommendations on which this assistance is carried out ( as in the case of the list of orphan diseases, the clinical recommendations have not changed since 2013; the standards also did not re -random attit * - E.K. *). Therefore, the investigator concludes, “legal grounds for directly manipulating the administration of the drug” do not exist.

“So, its introduction in stationary conditions is illegal,” the investigator repeated,

Apparently, not knowing that spinras injections are completely legally already more than six months in Russian medical centers.

In addition, the resolution says, Spinraz is not included in the list of vital and most important drugs (GNLP). But as the Family SMA charity foundation rightly notes, in Russia they are treated not only with the drugs indicated in this list: “This is the minimum list that the state is, but not restrictive. He does not mean that we only treat this, but the rest, excuse me, no. ”

Moreover, this week, the pharmaceutical company Janssen proposed to include the drug in the List of the GUNLP, which will reduce its cost for the packaging. However, it will be obtained not earlier than 2021 to change the list (in the case of a positive decision of the Ministry of Health Commission), since it is formed a year in advance.

Separately, we emphasize: neither the absence of “spinras” in the list of vvolp, medical care standards and clinical recommendations, nor the absence of SMA in the list of orphan diseases is the basis for refusing Masha and other patients in the drug.

And that's why.

To patients

Doctors prescribe Spinraz to patients of the SMA according to life indications, referring to the decree of government No. 890 (“On state support for the development of the medical industry and improve the provision of the population and healthcare institutions with medicines and medical devices”). This is the only document that allows patients to get Spinraz, which officials often neglect.

The resolution is subject to regional authorities to purchase a drug from budget funds. The only question is that the regions often cannot afford such an expensive medicine due to "holes" in the budget. According to the calculations of the Voronezh authorities, in order to provide all patients with the SM in the region in the first year of therapy, 865.4 million rubles are needed and 432.7 million rubles later annually.

The regional health department in official answers assures that the issue of financing the medicine is “worked out”. In fact, the dialogue occurs approximately this:

“After Masha put a disability, we made an appointment and got to the deputy head of the department. He immediately made us understand that the region would not take on such responsibility:

You can sue, but you will not have a “spinras”, goodbye! ” - recalls Marina Nikonova.

But the decision on the issue of the source of financing the drug is actually known for a long time. Experts proposed to introduce SMO to the list of highly voltage nosologies, which will allow financing medicines for the federal account. Such an initiative was already voiced by Senator Eduard Isakov. At Change.org, with a similar requirement, a petition was launched, which has already been signed by more than 120 thousand people. It remains to achieve changes at the legislative level.

Until then, parents of patients are forced to go to the courts. According to the latest information, for six months in Russia, 17 positive decisions were made in favor of patients of SMA. Not a single court was lost. True, there was probably a problem, probably one of the most important: litigation and paper red tape that precedes them, take precious time from patients. Without therapy, the disease is developing inexorably.

Patients need medicines right now.

Today, Masha Fedotkina is a year old. On the eve of the parents on behalf of the girl placed such a letter on social networks:

“I, like all girls and boys, of course, dream of new toys. I dream that compote, cake and caramel will come to visit me, and I can play with them, touch their fluffy legs. After all, before that they only looked at me from the TV screen. And my mother promised to bake the most delicious cake for me! I already know what desire I will make when we all together will blow a candle on a festive cake. I will ask myself ... a new life. I don't know what it is, this life. But I really want to know. Help me hold out. ”

How to help
Recipient: Marina Nikolaevna Nikonova (mother)

Sberbank: 2202 2009 5291 3851 or online +7 (900) 945 60 12

VTB: 5368 2901 5285 1079

Tinkoff: 5536 9138 3972 2044

Rosbank: 4405 0366 3667 0538

PayPal: Mashafhelp@mail.ru

QIWI: +7 900 945 60 12

Gofundme.com: Masha Fedotkina