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MINSK, Mar 14 – Sputnik. Patient organizations would like to create a public council under the Ministry of Health in order to start discussing urgent medical issues and defend their rights to protect health, said Elena Grigoryeva, executive director of the Social Assistance international public association during a meeting at the multimedia press center Sputnik Belarus.

Friendly attitude

“For the first time we gathered about a year ago when we realized that we can do more together. Today, there are 14 organizations in our“ Partnership of Patient Organizations of Belarus ”, and the platform on which we are united is a friendly attitude towards cooperation with the Ministry of Health. In addition, we all want to improve the quality of services provided to the population, "said Elena Grigoryeva.

Director of the International Public Association Social Assistance Elena Grigoryeva

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                    Sputnik / Elena Vasilieva
Director of the international public association "Social Assistance" Elena Grigoryeva

The Partnership … includes active organizations working on diabetes, rare genetic diseases, tuberculosis, HIV infection and many others. The speaker also noted that the partnership is open to other organizations, including regional associations.

“At the moment we are in the search for the most constructive form of dialogue with the Ministry of Health. This is not easy, we have already made several active attempts. In principle, there are certain agreements that we will meet, listen to each other, and seek some forms of interaction, but so far no specific forms have yet been revealed, "summed up Grigoryeva.

Russian experience

Representatives of Belarusian organizations also noted that they are interested in the experience of Russia, where a public council, created on the initiative of the ministry itself, has long been working under the Ministry of Health.

By the way, this was described in detail in a video bridge by the chairman of the Coordination Council of the Movement Against Cancer, a member of the Public Council under the Russian Ministry of Health Nikolai Dronov.

“Yes, indeed, the council was created on the initiative of the Ministry of Health, but we delegated representatives of all patient organizations there, as a result, everyone who wanted to enter was included in this council. In other places, we initiated the creation of such councils in the regions,” Nikolai Dronov said .

So, in Belarus they also strive to create a structure under the Ministry of Health, where patient organizations could regularly meet and communicate relevant issues and seek consensus in their solution.

"We want to solve the systemic problems that currently exist in our country – this is the lack of regular constructive communication with patients. At the moment, communication is built on the level of individual cases," said Elena Grigoryeva.

NGO Chairperson Support for People with Diabetes Ekaterina Goncharenko

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                    Sputnik / Elena Vasilieva
Chairman of the NGO "Support for people with diabetes" Ekaterina Goncharenko

She believes that there is little prospect, because while "units of patients receive help, several hundred do not even know that there is such an opportunity." Now, the complaints system mainly works in healthcare, and the Partnership of Patient Organizations of Belarus is ready to take on the function of establishing a dialogue between patients and the ministry.

That is the question

Already, a number of initial proposals and questions have been formulated that representatives of public organizations wanted to discuss with the Ministry of Health.

"Our first question is quite common for many patient organizations – is ensuring the availability of modern medicines, for some there is no state registration," said Ekaterina Goncharenko, chairman of the NGO Support for People with Diabetes.

Another issue is the lack of the possibility of safe nutrition in childhood, when it comes to celiac disease, when you can not eat gluten. Organizations would also like to raise the question of the possibility of Belarusian patients participating in international clinical trials and the lack of an individual approach when vaccinating patients with certain chronic diseases. In addition, the group is concerned about the lack of modern treatment protocols for rare genetic diseases.

In the format of a video bridge they talked about the experience of Russia on the subject of patient organizations

©
                    Sputnik / Elena Vasilieva
In the format of a video bridge they talked about the experience of Russia on the subject of patient organizations

You can learn more about the prospects of creating a council under the Ministry of Health, Russian experience and the creation of a genetic center by watching a video from the Sputnik Belarus multimedia press center.

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