“Children’s rights are not broken”: why the state refuses to issue the required medication

More than a year children are not received from the state vital drugs, their parents sued the Department of health of the Voronezh region in the court. On what received the answer – the Department has taken “exhaustive measures”, the drug children have. But the drug was purchased by the Foundation “Life as miracle”.

Photo: Sebastian Rose / Getty Images

  • “You have so little. It makes no sense to certify the product for thirty people”
  • The members and their families will receive medications for free
  • To son survived, my mom changed the law
  • The mother of a disabled child was accused of drug trafficking for selling unnecessary drugs
  • The results of the drug denied – but the parents for the past 7 years fighting for her son’s life

A family of the Voronezh region with two sick children more than a year did not receive drugs from the state. Tanya and Bogdan, Peretachenko rare and complex orphan disease tyrosinemia, which gives heavy complications on the liver and kidneys. Month course of drugs costs about 2 million rubles.

Tatiana and Bogdan, Peretachenko. Photo: kakchudo.ru

From June 2018 Foundation “Life as miracle” took wards the family. Caring people are what is called “world on a string”, raised money for two courses for these children. Medication is vital – without this drug, children with such diseases can not live. Accordingly, these drugs are included in the list of essential medicines, which guarantees our state.

Official denial there, but veiled, said that children and provided with all necessary

Anastasia Cherepanova, Director of the Foundation for assistance to children with severe liver disease Foundation “Life as miracle”

Anastasia Cherepanova

In this case, the drug must be purchased at the expense of the regional budget. The Department of health of the Voronezh region for almost a year doing nothing, our Foundation joined, made his first courses of drugs. The parents of the children sued the Department and the court proceedings began. In response, we received an official letter from the Department in which it was written that “children’s rights are not violated,” that children are provided with the necessary medication and that the Department in fact is not idle. But the whole thing is that Yes, they are provided, but at the expense of our Foundation! The Department was inactive, they are really even we have not addressed, that is, doing nothing at all. Official denial there, but covertly written about “exhaustive measures” – that children and provided with all necessary.

Today was the second meeting and the parents won the case!

This is a rare case when the judge in detail and listened to all parties, professionals, attracted to the third party – our Foundation to understand the problem fully. The judge tried to understand the characteristics of the disease, the need of drugs. But in fact this is the first case when the Fund was involved as a third party.

In the end, the court found that the Department is obliged to give medicines immediately that children should be provided with this drug at the expense of the regional budget and that the actions of the Department are illegal. This is an absolute victory. I’m very happy for this family. We will continue to monitor the actions of the Department.

The Department tried to make it look like it operates together with the Foundation
Farit Akhmadullin, President of the Association of patients with rare and life-threatening diseases “to save and preserve”

Farit Akhmadullin

I think that the victory in court was made possible due to the fact that was presented all the evidence. The Department tried to put it in that light, if it were they influenced the help of the Foundation “Life as miracle”, supposedly the Foundation along with the Department. Great contribution to today’s proceedings made Svetlana Polyakova, a physician of the RCCH. She explained what this disease is and how it is treated, what dosage, and what might be the consequences if the patient receives the right medicine. The court was only to lawyers and the General practitioner from the clinic who have never faced with this disease. If not for Svetlana Igorevna, nobody could explain what kind of disease.

For other regions and for the Supreme court it was not the first similar case, ending with a victory. But in the Voronezh region is the first case. Early in the region of 80% of such appeals were not even allowed to court.

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