A Series of Regional Meetings Under the Project to Improve Medical Care for Children with Serious and Rare Diseases was Launched in the Chechen Republic
The Ministry of Healthcare of the Chechen Republic in Grozny held the first regional meeting of the Project to improve the interaction of participants in providing medical care to children with rare and severe diseases, to increase the availability of medicines for «rare» patients and the work of the Russian medical genetic service. Further meetings will be held regularly in different regions of the country.
Topics for discussion:
- Improving the effectiveness of the regional healthcare authorities, medical genetic service for the timely diagnostics of children with severe life-threatening diseases
- provision of expensive medications and medical products in interaction of regions with the Charity Fund «The Circle of Well»
Key organizers of the Project:
- State Fund for assistance to Russian children with severe and rare diseases «The Circle of Well»
- Research Centre for Medical Genetics
- Association of medical geneticists of Russia
- Regional healthcare authorities
- Community and patient organizations
The organizers of the regional project and moderators of the meetings are ANPO “Centre of expert assistance on issues related to rare diseases”, «House of Rare» and ANPO «Society of patients with phenylketonuria».
The participants of the first meeting in Grozny analyzed the interaction of all structures of provision of medical care of patients with orphan diseases, as well as made proposals for improving the work with the Charity Fund and medical genetic consultation in Chechnya. As a result, an issue sheet has been prepared for discussion at future meetings in other regions.
Alexander Tkachenko, chairman of the Board of the Charity Fund «The Circle of Well», said:
“Treatment of severe and rare diseases often requires innovative and expensive medications and medical products. For many constituent entities of the Russian Federation, the provision of children with such diseases has been a serious burden on the health budget. Now the Fund «The Circle of Well» comes to the help.
The Fund was established by the President of the Russian Federation as an additional mechanism for organizing and financing assistance to children with orphan diseases. Over a year and a half, the Fund has provided expensive medicines and medical products to 4,500 children in care on a list of 58 diseases, and in all regions of the country - to 90 billion ruble. This is the money saved by the regions. This means that additional funds can be directed to the provision of adult patients with orphan diseases, to other healthcare development tasks in the regions. The Fund is interested in a thorough study of the experience of interaction between all participants of care for children with rare diseases - identifying bottlenecks, problems and, conversely, best practices. We are ready to help and share our experience. We believe that the regions themselves should be interested in organizing this interaction in the most effective way - for the benefit of children living in regions with severe and rare diseases. We are glad that openness, professionalism, concern for children, interest in joint work on the part of our colleagues from the Chechen Republic allowed us to start a series of regional events”.
Sergey Voronin, chief physician of the Research Centre for Medical Genetics (RCMG), said:
“Currently, the specialists of the reference centre of extended neonatal screening, which is RCMG, form a system of inter-regional interaction for the earliest possible identification of children with hereditary diseases. The work of this system will in most cases lead to suspicion of dangerous pathology already in the first week of a newborn’s life. Unfortunately, laboratory methods are only half the solution. Parents of children with many hereditary diseases, such as SMA, spend considerable time on paperwork necessary to start an extremely expensive treatment. Therefore, in addition to the objective of accelerating laboratory diagnostic time, it is vital to reduce the time required to process and prepare documents in the region to begin treatment. The shortening of terms will be achieved by increasing the continuity and efficiency of interaction between RCMG, regional healthcare services, federal medical organizations and the Fund «The Circle of Good». As a reference centre for extended neonatal screening, RCMG has a direct interest in shortening the document circulation, and a series of regional meetings will bring us closer to solving this urgent problem”.