The Minister met with NGOs and conducts a briefing: the main thing about the pain of seriously ill children

21 Aug. PRAVMIR. In early July, the mother of a disabled child Catherine Connova accused of drug trafficking for selling extra of diazepam – drugs for epilepsy, purchased from intermediaries to relieve bouts of pain from my son. After a public backlash, the criminal case was dismissed, and on 18 August the head of the Ministry of health said that all over the country these drugs are in need of 7 children. Then the staff of the palliative care services and the parents of terminally ill children has published an open letter to the President and said the real numbers of those in need of 23 thousand people.

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Minister of healthcare Veronika Skvortsova has held a meeting with representatives of public organizations and staff of the palliative care services, after which a briefing was held for media.

“We worked for over 2 hours, I remembered all the milestones of our work, starting in 2012. Noted that now in Russia was 4 times more antiepileptic drugs. The situation is in constant development. In September of this year, we will receive a check 6 new antiepileptic drugs, 6 are undergoing clinical trials, including non-invasive forms. Just over a year ago was developed a road map for further development of potent painkillers and anti-epileptic drugs on the basis of the Moscow endocrine plant. Primarily it is aimed at creating children’s pumps and non-invasive forms. Because a number of foreign drugs, we see the disruptions, as part of the road we will produce domestic drugs.

First, it was mentioned that we have made significant progress in recent times. In addition, in 2016, established the national clinical guidelines for the treatment of children with epileptic status. In 2017 established clinical guidelines for pain management in children and adults. However, the situation is not fully resolved, continue the positions which it is desirable to have in Russia, is diazepam in microclyster and a number of other forms capable of removing the attack the child at home.

They are really recommended by who and our experts have included these forms in clinical guidelines, but despite the appeal to Western pharmaceutical companies, none of these manufacturers did not come to our market with the desire to register, citing economic disadvantage”.

According to the Minister, there are three ways of ensuring access to essential medicines:

“The first is the production in Russia of own products, import substitution on the basis of the Moscow endocrine plant.

Second: already, the country has 206 pharmacies that have a license to work with narcotic and potent drugs. Having substance in small packs, pharmacies may themselves produce rectal suppositories and syrups. This issue is in development. Currently, 42 of the region have such pharmacies and formally can start making. But you need to work out a regulatory framework, provide clear methodological guidance. This way the Ministry of health considers most correct, and requiring not much time.

The third mechanism: the centralized importation of unregistered medicines. Of course, this mechanism from the point of view of transparency of the regulatory framework are less preferred and can be used in exceptional circumstances. But we work through it too. If the country suddenly need to use drugs that have not registered that we had achievements, as they bring in the country and to properly and transparently distributed. This mechanism requires changes in the law.”

7 (children in need of anesthesia. – Ed.) is that the 77 regions responded to the request of the Ministry of health. This number is not objective. 23000 is an estimated figure, which, most likely, also is not objective. That opened how to make the calculations are correct and objective is to work with regions and survey data collections through the children’s parents. We checked,” – said the Minister.

Veronika Skvortsova also commented on the case of Catherine Connoway:

“Why this situation happened? Using the rectal form, she realized that she is not effective enough, and moved on to shapes registered with us. Routinely, all these forms of work. And rectal is indispensable at the beginning of the attack. We therefore support the creation of industrial forms of rectal microclysters in Russia.

It should be noted that even colleagues rightly said that sometimes the regions do not implement the right patient and do not send documents to the Council to allow the personal importation of unregistered drug. This does not apply to narcotic and potent drugs, that’s another story and it is not regulated by the Ministry of health. Here, I instructed, we will investigate each separate subject of the Russian Federation in order to identify these cases and to review the rules of passing through the Federal center and make it the least burdensome for patients or parents of children.

Colleagues from the NGO gave me a folder with specific examples, with the names of patients from the regions and, when they were denied. We’ll deal with it and carry out preventive measures so that each citizen can exercise their rights in full.”

“The fact Connoway” and “only 7 people”

In early July, the mother of a disabled child Catherine Connova accused of drug trafficking for selling extra of diazepam – drugs for epilepsy, purchased from intermediaries to relieve pain. Then in her defense were made by non-profit organizations, charities, the children’s Ombudsman, the Public chamber and more than 275 thousand ordinary Russians. On 6 July, the Ministry of internal Affairs has cancelled the decision about excitation of criminal case. After this resonant case the founder of the charity hospice charity Fund “Vera” Nut Federmesser said about the need to solve the problem of providing vital medicine for seriously ill children in Russia and told how it can be done.

“…To solve the problem of the lack on the Russian market drugs to ease the suffering of terminally ill children, is easy and inexpensive. And not for long. It would be a desire… It needs to be done. We simply do not have the right to prevent another case “of Arseniy and Katie Cenowych”, – said social activist.

In mid-August, the Minister of health Veronika Skvortsova in an interview with “Komsomolskaya Pravda” stated that only 7 of children in Russia need rectal diazepam and other anti-epileptic drugs. In response to this statement on August 20 the staff of the palliative care services and the parents of terminally ill children and children with epilepsy published an open letter to Vladimir Putin.

In it they reported that unregistered in the Russian Federation the medicines need about 23 thousand seriously ill children.

The authors of the appeal asked the President “to give instructions to the relevant agencies to create an accounting system needs and implement a mechanism to rapidly deploy a vital drugs or pediatric forms according to the recommendations of the world health organization and the international standards for the treatment of epilepsy”.

The Ministry of health acknowledged that the data on 7 of needy children unable to be unfaithful, and went to the dialogue with the representatives of public organizations.

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