On orphan uniqueness to standard technology


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Abstract

The paper discusses the problem of free drug provision as an integral part of medical care in the amount of state guarantees and lists legislative contradictions that cause the above violation. It clarifies the concept of the drug legal status, by using examples, and on this basis considers whether the patients needing therapy with orphan drugs may have access to drug provision. The author analyzes normative legal acts regulating the drug provision in patients with rare (orphan) diseases and on this basis formulates a number of proposals to enhance both the availability of drug therapy to these patients and the efficiency of medical care to them, including suggestions to be considered by the State Duma, the Government of the Russian Federation and its subjects.

About the authors

A V Saverskiĭ

Президент "Лиги пациентов", член Экспертного совета при Правительстве РФ

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