From 2021, the state charitable foundation «Circle of Good» has taken over the provision of expensive drugs for children with rare genetic diseases. This is the beginning of a big change in the lives of hundreds of children. Thanks to the activities of the Circle of Kindness, children with 44 orphan diseases can receive the most expensive medicines in the world — genetic correctors. The fund exists at the expense of tax deductions from Russian citizens with an income of more than 5 million rubles a year. This money allows not only to return the quality, but also to save the very life of hundreds of small patients.
However, by the beginning of 2022, it turned out that some regional ministries of health are not fulfilling their duties and are refusing or hindering the execution of applications for the Circle of Kindness fund, delaying the process, thereby depriving young patients of a chance for life and health. We spoke with Alexander Tkachenko, head of the foundation, to find out why many children cannot get help, despite the fact that there is already money and legal opportunities for this.
— In the past few months, on social networks there is a lot of criticism of your foundation from parents of orphan children who cannot receive medicines, although the children fit all the criteria. What causes such problems?
These stories are still happening. I sometimes give up. There is a simple mechanism, it is adjusted. Through the portal of public services, parents themselves throw an application. We see it right away. The public services portal is like an entry point. The application gets simultaneously to us and into the unified state information system in the field of healthcare. This is such a secure circuit where you can send medical documents. As soon as the application gets there, it is immediately seen by the fund and the regional health department. Moreover, it clearly falls into the region where the child lives. And we immediately see that the region received the application and when it received it. Further, the region must provide us with documents. We can even help collect these documents, we have a coordinator in each region. But an application signed by the local minister is required from the regional Ministry of Health. Without it, we do not have the right to start the process by law. Then we work out all the documents ourselves. We made this application tool through the public services portal with only one purpose: so that parents and patient communities can control the work of the regions. But you can't control what doesn't work.
Head of the Circle of Kindness Alexander Tkachenko. Photo: Mikhail Grebenshchikov, especially for Novaya
— How large and time-consuming is this set of documents, that it requires so much effort from regional officials that they cannot cope?
— The documents are very simple. Documents proving the identity of the child are needed: birth certificate or passport. Confirmation of the diagnosis, that is, an extract. The federal council for prescribing the drug, all patients who are supposed to have such therapy have it, parents always do it. Everything. Our experts check all the documents and the correctness of the calculation of the dosage and the volume of the purchase of the drug. Experts are checking whether the calculations were wrong in the region, because it is clear that specialists from federal institutions have more expertise, they see more patients and work with these drugs. Due to the large volume of applications, the verification procedure takes, maybe, a day, a maximum of two or three. Usually we send verified applications to the expert council within a week, and then the purchase is made. If the patient is new and urgent, and there is a supply of the drug, then we redistribute the drugs. This happens in one day. They took two days to distant regions of the country.