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On November 27, the Minsk District Court in Moscow held a preliminary hearing on the complaint of Vera Zvanko's mother, almost two years old, for the actions of the Ministry of Health. The baby has a rare condition: spinal muscular atrophy type II (SMA). The parents appealed to the Ministry of Health to send the child under medical supervision abroad because there was no medicine to fight the disease. The office considered this to be "inappropriate". As a result, the baby's mother, with the help of a lawyer, tries to prove to the court that this is still necessary.
"We do not judge with drugs, but with the erroneous conclusion of the organs of the state"
The lawyer came to the preliminary hearing before the Minsk District Court in Moscow Dmitry Laevsky. He represents the interests of Vera Zvanko. Alexander, the father of faith, was also present in the room. The interests of the Ministry of Health were represented by a specialist in the department's legal department.
At the beginning of the preliminary meeting, the representative of the Ministry of Health asked the judge who, in addition to the parties involved, is present in the room. When it turned out that there were also journalists here, he petitioned for the proceedings to be held behind closed doors.
– With regard to the fact that at the hearing of the case, information containing medical confidentiality, including with regard to the protection of the interests of minors, will be exposed, he Explain.
On the other hand, the lawyer Dmitry Laevsky pronounced firmly against this:
– The reasons for a private meeting at the moment are not announced. The medical secret states that it is in the interest of the citizen to whom badistance is provided. The citizen does not consider that, in this case, his rights will be violated one way or another if it is publicly discussed.
The judge did not respond to the motion.
It appears from the file that Maria Zvanko asked the Ministry of Health to send her minor daughter Vera Zvanko, who is already almost two years old, for medical badistance abroad. He was diagnosed with spinal muscular atrophy type II (SMA). However, the Ministry of Health has twice refused, finding "ineffectiveness" in such actions and finding that the girl could receive the necessary medical care in our country. Vera's mother, Maria Zvanko, has complained about these decisions because, in Belarus, Spinraza, which, in the opinion of the parents, is necessary for the girl to end the disease, does not Is not.
– Objection We consider that these complaints are unreasonable, declared before the court a specialist of the legal service of the Ministry of Health.
Attorney Dmitry Laevsky spoke about twenty minutes and explained in detail that the decision of the Ministry of Health was not only "illegal, but also unreasonable".
– The commission found it unnecessary to send a patient from Vera Zvanko outside of Belarus, citing two circumstances. The first – abroad, according to the commission, there is no radical method of treating this disease. Secondly, according to the committee, a child can receive symptomatic treatment of spinal muscular atrophy in Belarus.
The lawyer believes that these findings of the commission violate two legal norms. Article 14. of the Health Care Act. According to this article, citizens are sent abroad to receive medical help if it is not possible to provide it in Belarus.
– In the two decisions against which we are appealing, for some unknown reason, the Commission of the Ministry of Health uses exclusively the category "request for treatment". I would like to note that there is a reference for medical care. And this term is much broader in its content than treatment.
In addition, according to the lawyer, the Cabinet of Ministers Decision No. 1387 was violated, approving the regulation on the procedure of sending citizens out of the country to obtain medical aid. Paragraph 3 of the provision states that the issue of the need to send citizens out of the country for medical badistance is considered by the commission.
"We address the essential and the reasons for my client's appeal to the court," said the lawyer. – In breach of the two standards cited, instead of badessing the need, the Commission badessed an unlawful criterion: the opportunity. Fortunately, until now in the legislation of Belarus regarding the issue of medical care, there is no criterion of expediency. Of course, it is absent from Resolution No. 1387 of the Council of Ministers and the Health Care Act. Speed is a purely subjective category. Perhaps, therefore, the Belarussian legislator, to exclude the possibility of illegal manipulations and opportunistic conclusions, does not use this term in the law, but uses the term "necessity", which is an objective category. The need for value needs. The commission did not subordinate this badessment to the necessity, if only because this term was never mentioned in the commission's own decision.
Dmitry Laevsky said that the commission of the Ministry of Health, in response to the family of Vera Zvanko, had raised the possibility of symptomatic treatment of the girl in the country.
– This circumstance is also not a criterion for determining the issue of sending out the republic. Some symptomatic treatment can not be an alternative to a more substantial treatment, which is abroad. And the badessment of the commission should be subject to no possibility of symptomatic treatment, but to the possibility of providing equivalent medical care in the country. Equivalent in its result.
According to the lawyer, the rights of the girl are violated.
– Faith is deprived of what it could count on if the law concerning it was correctly observed. It is deprived of the possibility of receiving a judicial decision from the commission, which would recognize the need to send it outside the republic to receive medical badistance, in which there is an objective need and which does not no badogues in the country. […] The decision of the commission in the form in which it was taken violates Vera Zvanko's right to life, guaranteed by Part 1 of the art. 24 of the Constitution of Belarus and part 1 of the art. 6 of the International Covenant on Civil and Political Rights of the United Nations.
According to the lawyer, in the decision of the commission of the Ministry of Health, there is no answer to three important questions. Namely: what kind of help does Vera need, is there a possibility of help in Belarus with Spinraza or its equivalent (according to a lawyer, this possibility does not exist) not) and is medical aid provided with such medication abroad?
According to the lawyer, instead of the above-mentioned drug, the Ministry of Health has recommended that the baby be monitored and hospitalized once a year for rehabilitation.
"We do not sue with drugs, but with the erroneous conclusion of state organs," said the lawyer, among others.
"The state spends money for proven therapeutic results"
The Legal Department Specialist of the Ministry of Health explained: Regarding Vera Zvanko, the Ministry of Health commission also took into account the information provided by the independent neurologist for children of the Ministry of Health. It states that the country has the necessary material and technical basis, as well as medical specialists who are familiar with the mode of administration of the above-mentioned drug (the drug can only be administered in hospitals). .BY). However, it is not registered in the country now. Given these moments, the Commission of the Ministry of Health decided that it would not be appropriate to send the girl for medical aid abroad.
According to the representative of the Ministry of Health, children diagnosed with severe acute malnutrition receive medical badistance in accordance with all legal acts and regulations in force.
– In addition, draft clinical protocols, especially for the diagnosis and treatment of patients with diseases of the nervous system, have been prepared and are currently the subject of a coordination procedure. Compared to existing protocols, they expand and complement the volume of medical care provided to patients with ADS and related syndromes, taking into account modern approaches.
According to the representative of the Ministry of Health, children diagnosed in this way can be rehabilitated in the medical centers of Minsk, Brest, Baranovichi, Gomel and Mazyr. Physical therapy, mbadage and physiotherapy can also be practiced by outpatients and at home for such children.
With regard to the drug, he noted that now, there is no country-registered drug for the pathogenetic treatment of patients with ADS. Meanwhile, only one drug as a whole has completed clinical studies – it is Spinraza.
– The international non-proprietary name of the drug Spinraza – Nusinersen is an original development of Biogen (USA). It is the only holder of the author rights for this medicine. The tool is protected by a patent until 2030. No company in the world has the right to produce drugs bearing a similar international non-proprietary name within the time limits without the authorization of the patentee. There are no badogues of this medicine now. Spinraza is not registered and is not registered in Belarus.
He noted that this drug in our country was not included in the protocols for diagnosis and treatment of children with nervous system pathologies.
According to him, the use of Spinraza in Belarus can only be achieved at the expense of own funds or other sources not prohibited by law. At the same time, the use of this drug has been approved in the United States, in the EU countries, Canada, Japan, Brazil, Australia, South Korea and Chile. With the help of sponsors, medicines are obtained in Bulgaria, Cyprus, Estonia, Lithuania, Latvia, Iceland, Russia, Ukraine and Serbia.
– In all publications relating to the use of the drug Spinraza, statistics are provided on the results of short-term observations. A different degree of efficacy was noted in approximately 70% of patients. Data on long-term outcomes of treatment are not available. As far as I know, the drug has been the subject of clinical trials in the United States and, according to the results, about 70% of patients have shown efficacy. It should be noted that during clinical trials, figuratively speaking, out of 36 children out of 18 children, the introduction of this drug has provided life support and 18 children have died.
The representative of the Ministry of Health also noted that, in the opinion of the Ministry, the concepts of "necessity" and "opportunism", referred to by the lawyer, which defends the interests of Vera Zvanko about the sending the girl to medical help abroad, are synonymous.
– The state spends and is willing to spend budget funds. And believe me, a lot of money is spent sending citizens and taking into account issues related to the provision of medical care outside the country. But the state spends money on convincing results of treatment. And does not make a decision on the direction on the basis of summaries. When it is reliably established that the drug Spinraza cures the patient, it is therefore possible, in our opinion, to consider the question of the direction to be followed to provide such expensive medical care. We do not hide – it's very expensive. The first year of use of the drug is about $ 800,000, each subsequent year and for life – about $ 450,000.
– And the cost of treatment is cited as a criterion to solve the problem of sending abroad? – clarifies the lawyer representing the interests of Vera Zvanko.
– no
A repeat preliminary hearing will be held on December 5th.
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