Regions will receive additional financing for the purchase of medicines for "rare" patients

A backup mechanism for providing medicines to patients with rare genetic diseases will appear in Russia. Such amendments to the law "On the Basics of Health Protection" were developed by the Ministry of Health. The changes were approved on March 10 by the government commission on legislative activity, sources in the Cabinet of Ministers told Izvestia.

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According to the amendments, if it is impossible for the regions to fulfill their obligations to provide orphan patients with medicines, they will be provided with inter-budgetary transfers from the federal budget.

"The reserve mechanism will affect only diseases from the list of government Decree No. 403 of 2012. Today it includes 17 diseases. But a much bigger problem for the regions today is adult patients with rare diseases who have not yet been included in any program. It is to support such patients that the regions need federal co—financing," said Elena Shukan, Head of the Rare (Orphan) Diseases Project Office at the Semashko National Research Institute of Public Health.

Shukan stressed that the very fact of introducing a backup mechanism into the main law on public health protection is a breakthrough. However, according to her, without expanding the 403 resolution to include new rare diseases, the reserve will not cover the actual needs of the regions to provide patients with rare diseases.

"In 2024, the Constitutional Court recognized that the provision of the law on regional financing does not provide for a backup mechanism for providing people with drugs when the region cannot perform its duties properly," recalled Vadim Tkachenko, lawyer, founder and CEO of the vvCube consulting group.

He clarified that the federal budget should allocate additional funds for the purchase of medicines for orphan diseases, therefore, the introduction of a regional support mechanism is the right decision.

Read more in the exclusive Izvestia article:

An abrupt case: regions will finance the purchase of medicines for orphan children