Drug maintenance financing of patients with rare diseases: changes on the regional level

Introduction. Financing of drug maintenance for patients with rare diseases has been remained one of the main topics in Russian Federation (RF) healthcare.

The aim of this article is to present data regarding financing of drug maintenance for patients with life-threatening and chronic progressive rare diseases leading to a reduced life expectancy and disability.

Materials and methods. There are considered changes in regional financing structure before (2018) and after (2020) the decision on the redistribution of drug maintenance financing from regional to the federal level for patients with hemolytic uremic syndrome, mucopolysaccharidosis type I, II, VI, juvenile arthritis with systemic onset, unspecified aplastic anemia, hereditary deficiency of factors II (fibrinogen), VII (labile), X (Stuart–Prower).

Results. Over 2020, only in 2 regions of the Russian Federation, the cost of drug provision for patients with rare diseases from the “List of life-threatening and chronic progressive rare (orphan) diseases leading to a reduction in life expectancy of citizens or their disability” at the regional level exceeded 500 million rubles in comparison with 6 regions in 2018. In addition, the threshold of 200 million rubles was exceeded in all regions included in the list of 20 regions of the Russian Federation with the highest expenses for drug provision of patients with mentioned rare diseases at the regional level in 2018, while in 2020, only 15 regions spent more than the indicated threshold.

Limitations. The number of Russian regions with large expenditures from regional funds on drug provision for patients with rare diseases were 20 regions in 2018 and 2020.

Conclusion. Consistent federalization of drug provision for patients with certain rare diseases in 2019–2020 led to a decrease in funding for the provision of drugs for rare diseases from regional budgets.

Compliance with ethical standards. The study does not require submission of the opinion of the biomedical ethics committee or other documents.

Contribution of the authors:
Komarov I.A. — research concept and design, collection, processing of material, writing text, editing;
Krasilnikova E.Yu. — research concept and design, collection, processing of material, writing text, editing;
Aleksandrova O.Yu. — research concept and design, collection, processing of material;
Zinchenko R.A. — research concept and design, collection, processing of material;
Kutsev S.I. — research concept and design, collection, processing of material.
All authors are responsible for the integrity of all parts of the manuscript and approval of the manuscript final version.

Acknowledgment. The study was carried out within the framework of the state assignment of the Ministry of Education and Science of Russia.

Conflict of interest. The authors declare no conflict of interest. 

Received: February 11, 2022
Accepted: March 23, 2022
Published: April 28, 2023