The justice of the villains

In just 8 minutes, St. Petersburg judges took a chance of life from Hepalov’s two -year -old bone. For the second time

On December 15, the St. Petersburg City Court refused the baby’s parents to oblige the Healthcare Committee of St. Petersburg to provide a two-year-old costume suffering from spinal muscle atrophy (SMA), a vital medicine of Zulgensma. Thus, the City Court upheld the decision of the first instance - the Kuibyshevsky district court, issued on August 28 and challenged by the family. Already on December 16, the Gepalovs filed a new lawsuit in the Kuibyshevsky district court. The claims of the parents of the “emoticon” boy are the same, but new arguments and arguments appeared.

Svetlana and Alexei Gepalovs are not the first family in Russia, raising a child with a diagnosis of a type of type of type 1, which began to achieve treatment at the expense of the state. But the first, which required the purchase for her son of a saving, but fabulously expensive drug, is Zulgensma (parents of “emoticons” are usually sued with the budget for “Spinraz” and in most cases the courts win).

However, the treatment of spinras is lifelong. And just one Zolgensma injection is enough to cure the SMA, only it costs more than $ 2.1 million - today it is the most expensive medicine in the world. At the budgetary funds, Zulgensm has not yet acquired any child in Russia.

The Gepalovs immediately decided to seek the purchase of “Zulgensma” for the state from the state. For a long time, inexpensive correspondence with officials of the Ministry of Health. The boy’s parents reminded them: according to Federal Law No. 323 “On the basics of protecting the health of citizens”, all children with disabilities have the right to drug provision, including drugs unregistered in Russia, if the disease led to disability and threatens life, as in the case of bones. But the light and Alexei were only footballed from the department to the department.

In August, the hepalovs turned to the Kuibyshevsky district court demanding to provide their child with a drug for SMA. Parents relied on the conclusion of two medical consultations: the regional (issued in February 2020 in the St. Petersburg Hospital of St. Olga) and the federal (voiced in April 2020 at the National Medical Research Center named after Almazov). Both recommended Costa Treatment with Zolensma.

But at the end of August, already during the trial, officials of the St. Petersburg Health Committee hurriedly, even without examining the child, organized a third, unscheduled consultation for treatment. His conclusions were different from the previous ones: the “The appointment of“ Zolgensm ”is not shown to Konstantin Gepalov.” In court, the representative of the city health committee Tatyana Sapigina explained why the doctors had previously recommended Zolgensma Kostya twice:

“Doctors proceeded from the fact that the family will seek the drug through charitable foundations.” As a result, the court did not ordered to buy “Zolgensm” for the boy at the expense of the budget.

The appeal filed by the Hepalovs to the refusal of the Kuibyshevsky district court studied the City Court for almost three months, and examined in just 8 minutes (the parents of the bone were audio recording, so the duration of the court session is precisely known).

“During this time,” says Svetlana Hepalova, “we tried to introduce new documents from the Novartis company ( Zolensma manufacturer . - N.P. ), an extracted epicrisis with confirmed weight and condition of the child, the decision of the new medical consultation conducted in September 2020 in the new federal medical institution and confirming the purpose of Zulgensma. They asked to listen to our attending physician and a specialist in the field of neuromuscular diseases. The judges were completely denied us. They did not accept a single paper. Everything turned out to be pointless and inappropriate. What justice can we talk about, even if the judge chose the tone of communication with the context of “Fool, what are you hoping for?”!

Representatives of the St. Petersburg Committee on Health did not appear in court. Moreover, they asked to consider the case in advance without their participation.

“Usually, decisions in the appeal are prepared in advance,” Ildar Tukhvatullin commented on the “new” hepal lawyer. - Already by the behavior of the judges it was clear that the verdict of the first instance would be in force.

Naturally, in this case, everything rests on money. If the price tag of the medicine was less than once every twenty, then no questions with its purchase would have arisen. In the new lawsuit filed in the Kuibyshevsky District Court on December 16, we stated the same claims. But they brought a new argument and attached a new decision of the federal medical consultation for the appointment of Zulgensma for the bones of Hepalov. I think we will achieve the result, this is only a matter of time.

But it is time that is the main enemy of children with a diagnosis of SMA. It works against them. The child becomes older. The pathology is aggravated. Slowly, but still increases the weight of the baby.

Age and weight are the main limiters to start the treatment of SMA and Zulgensma, and Spinraza, and any other drug.

To date, hepals already have in their hands an invitation from the Health Center of the University of California at Los Angeles-for the treatment of Zulgensma. There is a conclusion that the child is fully consistent with this method of treatment. Even according to American standards, the drug is applicable if the child’s weight does not exceed 13.5 kg (in European ones - if the baby’s weight is less than 21 kg). Kostya weighs 10.2 kg today.

On May 14, 2020, the Hepalovs opened a charity fee. At the moment, the boy’s parents raised 15 million 704 thousand rubles. The total cost of bone treatment in the American clinic translated into Russian money is a little more than 168 million rubles. The family needs to collect another 152 million.

- Without guessing, we rushed to court again today - to fight the system. We are ready for anything, ”says Svetlana Hepalova. - We do not know what will work.

How to help:
Sberbank : 4276 1804 6605 7469

Tinkoff : 5536 9138 5120 5787

VTB : By phone number 89149385035. Recipient - Svetlana Andreevna G.

Sberbank (St. Petersburg) :

4276 5500 7775 6404 (Alena Andreevna B.) +7 911 847 41 89

Kiwi : 89148786752

PayPal : svetik-glans@mail.ru (Svetlana Hepalova)

Foundation "Rescue Circle" :

Send SMS to number 3443 with the text "Kostik 500" (where 500 is the amount of assistance)

Foundation "Savings Life" :

Mastercard 5140 1702 8653 6280