An abrupt case: regions will finance the purchase of medicines for orphan children
Additional funding will be allocated to regional budgets for the purchase of medicines for patients with orphan diseases. Such a bill was approved by the Cabinet of Ministers. Now the regions are partially obliged to purchase such medicines themselves, but if there is a shortage of funds, they do not do this, and then patients have to seek drugs through the prosecutor's office and in the courts. It was after the decision of the Constitutional Court that the Ministry of Health developed amendments to the law on health protection, which oblige the creation of a reserve procurement mechanism. The measure will improve the situation, but there is a risk that the regions may begin to abuse the additional source of funding provided, experts believe.
How medicines are purchased
A backup mechanism for providing medicines to patients with rare diseases will appear in Russia. Such amendments to the law "On the Basics of Health Protection" were developed by the Ministry of Health. On Monday, March 10, the changes were approved by the government commission on legislative activity (the document is available to Izvestia), sources told the editorial board in the Cabinet.
The changes will make it possible to finance the provision of medicines to people whose diagnosis is included in the list of life-threatening and chronic progressive rare diseases. Vladimir Gruzdev, Chairman of the Board of the Russian Bar Association, told Izvestia about this. If it is impossible for subjects to fulfill their obligations, inter-budget transfers will be provided from the federal budget.
"The government will be able to establish the procedure and criteria for confirming the fact that regional authorities cannot fulfill their powers to provide medicines," he said. — The conditions and procedure for providing financial support from the federal budget will be developed.
The regional budget funds the treatment of life-threatening, chronic and rare diseases, and a corresponding government decree was signed in 2012. There are currently 17 diseases on this list. Previously, there were more, but some of them were transferred to the federal level — to the high-cost nosology program.
The Chairman of the Board of the AYR recalled that in September 2024, the Constitutional Court recognized the norm on regional financing as inconsistent with the basic law: it does not provide for a backup mechanism for providing citizens with medicines when the region cannot perform its duties properly.
The reason for checking the constitutionality of the provisions in 2024 was the appeal of the State Council of Tatarstan. It said that patients in regions with budget deficits are less protected than in more affluent ones. And living in a particular region makes patients' lives dependent on this factor. The current situation also gives rise to the phenomenon of "drug migration", when families with a patient with a rare disease are forced to move to another region of the Federation in order to receive life-saving medications on a regular basis.
Orphan diseases are called rare diseases — no more than 100 patients per million population. Due to their rarity, these diseases are usually not well studied and do not respond well to treatment, which is extremely expensive. The list of orphan nosologies is formed by the Ministry of Health on the basis of statistical data.
The federal register of orphan diseases includes 21.2 thousand people. The average cost of therapy for one such patient is about 2.76 million rubles per year.
Izvestia sent a request to the Ministry of Health with a request to clarify how the additional funding mechanism will work and what criteria may be used for its use.
Problems with the delivery of medicines
The high cost of such medicines makes it difficult to purchase them independently, and often makes it impossible, the Constitutional Court has recognized. Therefore, resorting to drug provision at the expense of the state budget is actually the only available way to receive life—saving treatment.
Often, patients have to seek the issuance of medicines, including by contacting the prosecutor's office. In February 2025, in Yekaterinburg, it was thus possible to obtain the necessary drug for a minor patient. The child was diagnosed with a life-threatening condition and required medication that was not registered in Russia. The check showed that the regional Ministry of Health refused to provide the drug due to the lack of its registration in the country.
But the medical commission confirmed that there are no alternative methods of treating the disease. As a result, the prosecutor's office went to court with a request to oblige the agency to provide the child with medicine. The Leninsky District Court satisfied the claim.
At the same time, in the Khostinsky district of Sochi, the prosecutor's office revealed violations in the provision of medicines to an 11-year-old disabled child suffering from a rare disease. It was established that the medical organization did not submit timely applications for the necessary medicines and medical products. The child's family was forced to purchase them at their own expense.
The Prosecutor's office submitted a submission to the Minister of Health of the region. After reviewing the application, the child was provided with all the necessary medicines in full.
And in early February 2025, the prosecutor's office of the Oktyabrsky district of Ulan-Ude obtained through the court the provision of free delivery of the necessary medicine to a woman with a rare disease, the cost of which exceeds 33 million rubles per year.
The woman was in dire need of expensive medication, which she needs to take regularly. To restore the violated rights, the prosecutor's office filed a lawsuit against the Ministry of Health of the region and the medical institution. The court satisfied the requirements.
Kirill Kulyaev, chairman of the patient organization Another Life, said that cases of treatment interruptions have become more frequent in the regions since 2025. For example, according to him, such a situation has developed in the Krasnodar Territory, the Chelyabinsk Region and a number of other regions.
He expressed concern that if the amendments are adopted, "the regions, in order to show the need for additional federal funding, will artificially create interruptions in the treatment of patients with rare diseases."
The hybrid financial support system will ensure reliable supplies and reduce the number of lawsuits, believes Kirill Masliev, Candidate of Medical Sciences, member of the State Council's Active Long Life Commission, Head of the Department of Preventive Medicine at RUDN University.
— As a rule, this is a mere formality, since there are simply no guilty parties in the absence of money in the regional budget, and time is expensive, — the expert emphasized. — Our country has a lot to strive for in the field of treatment and prevention of orphan diseases. In particular, the list of rare diseases itself may expand into dozens of positions that are being debated in the medical field.
In his opinion, such amendments indicate the real social orientation of the country.
— And our state passes this test of "humanity" with such laws. The budget allocation is also evidence of this — about 6.5 trillion rubles have been allocated for the implementation of social programs, which is second only to defense spending," he said.
The reserve mechanism is one of the measures aimed at solving the issue of providing medicines to adult patients, said Yan Vlasov, co—chairman of the All-Russian Union of Patients. But, according to him, it is difficult to call the solution perfect.
"The reserve mechanism should then extend not only to the 17 diseases for which subjects are now required to spend their funds, but to a larger list," he believes.
The disadvantage of this initiative is that the backup mechanism will apply only to diseases that are currently listed in the government decree, said Elena Khvostikova, head of the Genome Patient Care Center.
"Before implementing the mechanism, it would be worthwhile to expand the list of diseases included in the 403rd government decree in order to resolve the issue of drug provision for all adult patients with rare genetic diseases," she believes. — In addition, it is worth considering the possibility of redistributing purchased drugs between regions.
There is no such possibility now, she stressed: medicines disappear if the patient dies.
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