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Age Differences in Drug Coverage for Patients with Rare Diseases Included in the Lists Approved by Government Decree No. 769 dated May 21, 2021
https://doi.org/10.25557/2073-7998.2025.09.144-149
Abstract
Subsidized drug coverage out of federal or regional budget resources is available to patients with 28 rare (orphan) diseases; all such patients are listed in federal registries. An additional drug coverage mechanism for children with rare (orphan) diseases under 19 years of age is the Circle of Good Foundation; children are registered in the Foundation’s informational resource. For patients with rare (orphan) diseases over 19 years of age the inclusion in federal registries and subsidized drug coverage can be arranged under several scenarios. For most patients drug coverage is available only if they have the «disabled» status; such patients are not listed in federal registries of patients with rare (orphan) diseases. According to the analysis of federal and regional publicly guaranteed subsidized drug coverage programs under which drug therapy with orphan drugs for patients with rare (orphan) diseases over 19 years of age can be continued, it has been found that it is necessary to expand public drug coverage guarantees for patients with rare (orphan) diseases over 19 years of age based on their «rare» diagnosis without the need to have a disability.
Keywords
rare (orphan) disease,
drug coverage,
orphan drug,
children,
the Circle of Good Foundation,
public guarantees,
patients wirh rare (orphan) diseases over 19 years of age
Supporting agencies: The study was conducted as part of a state assignment for the Research Centre for Medical Genetics and N. A. Semashko National Research Institute of Public Health.
About the Authors
E. Yu. Shukan
Research Centre for Medical Genetics; N. A. Semashko National Research Institute of Public Health
Russian Federation
Russian Federation
1, Moskvorechye st., Moscow, 115522; 12, bld. 1, Vorontsovo Pole st., Moscow, 105064
N. S. Smirnova
PROVE Ltd.
Russian Federation
Russian Federation
112, Apt. 39, Tankista Khrustitskogo st., Saint-Petersburg, 198217
R. A. Zinchenko
Research Centre for Medical Genetics
Russian Federation
Russian Federation
1, Moskvorechye st., Moscow, 115522
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Review
For citations:
Shukan E.Yu., Smirnova N.S., Zinchenko R.A. Age Differences in Drug Coverage for Patients with Rare Diseases Included in the Lists Approved by Government Decree No. 769 dated May 21, 2021. Medical Genetics. 2025;24(9):144-149. (In Russ.) https://doi.org/10.25557/2073-7998.2025.09.144-149
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