The All-Russian Patients` Union has requested the government to increase the budget allocated for purchasing medications for individuals suffering from rare diseases. The union`s appeal highlights that inadequate funding has led to difficulties in procuring essential drugs for conditions such as hemophilia, malignant neoplasms, and multiple sclerosis. In response, the Russian Ministry of Health assures that there is an average stock of these drugs sufficient for three to seven months and that procurement efforts are ongoing.
The All-Russian Patients` Union (VSP) formally appealed to Russian Prime Minister Mikhail Mishustin, urging consideration for increased funding for the «14 High-Cost Nosologies» program. This federal program is responsible for supplying medications to people diagnosed with 14 rare and socially significant diseases. These include hemophilia, cystic fibrosis, pituitary dwarfism, Gaucher`s disease, malignant neoplasms affecting lymphoid, hematopoietic, and related tissues, multiple sclerosis, and others. The «14 VZN» program currently serves over 230,000 adults aged 18 and above, while an additional 15,000 children with orphan diseases receive treatment through the «Circle of Good» fund, which is funded separately by the government.
For the year 2025, the program was allocated 69.1 billion rubles. However, according to the VSP, 67.9 billion rubles have already been spent on procurement within the first five months, leaving an unmet need for medications exceeding 10 billion rubles based on actual patient requirements.
The organization informed Mr. Mishustin that it has received reports detailing problems with medication supply from 28 regions across the country. The most critical shortages are reported for hemophilia (estimated 4.3 billion rubles worth of drugs not procured), malignant neoplasms (3.1 billion rubles), and multiple sclerosis (3.2 billion rubles).
«If the program had been indexed (in 2025) at least to account for inflation, the current funding would amount to 84.6 billion rubles,» the letter from VSP states. «It is important to note that besides inflation, logistics and currency exchange rates also impact the supply and final cost of medications in Russia.» The VSP also cites the increasing number of patients with rare diseases as another reason for needing additional funds. Between 2021 and 2025, over 200 new adult cases of hemophilia and approximately 1,000 children were identified. Furthermore, treatment regimens for almost all patients require increased drug dosages as they grow and gain weight.
According to the organization, the issue of redistributing medications internally within regions to utilize surpluses in pediatric or adult segments has resurfaced.
«In 2021, when the All-Russian Patients` Union initially raised this issue with the government… the problem was successfully addressed by transferring funding for the pediatric patient cohort from the high-cost nosologies program to the `Circle of Good` fund`s resources. However, four years later, that positive effect seems to have diminished, and the issue of medication supply is once again urgent,» the appeal concludes.
Insufficient funding is indeed one of the primary challenges facing the «14 VZN» program, confirms Alexey Fedorov, an expert in public procurement. He explains, «If a drug isn`t purchased using federal program funds, the region is still obliged to provide it to the patient under the regional benefit. However, firstly, regions cannot achieve the same favorable prices as the federal center; due to smaller purchase volumes, they are offered significantly higher costs for the identical medications. Secondly, patients experience interruptions in their therapy and are sometimes forced to pursue legal action to obtain their necessary drugs.»
Mr. Fedorov adds that the financial burden of treating orphan patients covered by the VZN program leaves regions with less money available for residents with other illnesses, consequently impacting the healthcare system as a whole. Therefore, he views additional funding for «14 VZN» as a «rational solution» that would benefit patients, regions, and the federal government alike.
The press service of the Russian Ministry of Health informed that procurement of drugs under the program has «already been completed in the volume of 70–90%.» They stated that «additional procurement activities are currently underway to fulfill 100% of the annual volume.» Certain medications, such as those for hemophilia patients, will be procured after manufacturers re-register their maximum allowable selling prices.
The Ministry of Health also noted that the «average remaining stock» of medications for individuals with multiple sclerosis, malignant neoplasms of lymphoid, hematopoietic, and related tissues, and hemophilia «ranges from three to seven months.» The ministry emphasized that drugs are redistributed between regions when necessary. The agency further added that it consistently «promptly responds to appeals received from the All-Russian Patients` Union, as well as other patient organizations, whenever a shortage arises for a particular drug used to treat individuals with the 14 VZN conditions.»
