The All -Russian Union of Patients asked to finish the program « 14 VNS »

The All -Russian Union of Patients asked the government to increase the budget for the purchase of drugs for the treatment of people with rare diseases. The appeal says that due to a lack of financing, there were problems with the purchase of drugs for hemophilia, malignant neoplasms and diffused sclerosis. The Ministry of Health of the Russian Federation assures that the supply of drugs for such patients on average is for another three to seven months and that the purchases are ongoing.

The All -Russian Union of Patients (VSP) appealed to the chairman of the Government of the Russian Federation Mikhail Mishustin with a request to consider the possibility of refinancing the program “14 high -cost nosologies” (the organization has a letter “Kommersant”). Recall that within the framework of this program, at the expense of the federal budget, people with 14 rare and socially significant diseases are provided with medicines. These include: hemophilia, cystic fibrosis, pituitary nanism, Gauche’s disease, malignant neoplasms of lymphoid, hematopoietic and related tissues, multiple sclerosis and others. Now the 14 VNS program covers more than 230 thousand people aged 18 years of age (another 15 thousand children with orphan diseases provides treatment with the Circle of Good Fund, which is financed by the government separately).

In 2025, 69.1 billion rubles were allocated to the work of the program. According to the VSP, for five months, 67.9 billion rubles have already been spent on purchases, and the actual need for patients in drugs is not closed by more than 10 billion rubles.

The organization informed Mr. Mishustin that she received reports about problems with drugs from 28 regions. The most difficult situation with hemophilia (medicines in the amount of about 4.3 billion rubles), malignant neoplasms (3.1 billion rubles) and multiple sclerosis (3.2 billion rubles) were not purchased.

“If the program had been indexed (in 2025. « Kommersant ») at least at the inflation level, current financing would be 84.6 billion rubles, the letter says. “It is important to consider that in addition to the inflation on the supply and final cost of drugs in Russia, the issues of logistics and exchange rate of currencies have influence”. Another reason to add financing, writes SSP is an increase in the number of orphan patients. So, from 2021 to 2025 more than 200 adults with hemophilia and about 1 thousand children were identified. In addition, the therapy schemes in almost all patients involve an increase in doses of drugs due to growing up and a set of body weight.

According to the organization, the issue of redistribution of drugs within the regions in cases where excess remained in the children’s or adult segment again.

“In 2021, when the All -Russian Union of Patients appealed to the government on this issue … This problem was solved by switching financing of the children’s cohort of patients from the high -cost nosologies to the sources of the Krugs of the Krug Foundation. But four years later, this effect can be called lost, and the issue of drug support is again relevant, ”the appeal says.

Insufficient funding, one of the key problems of the 14 VNS program, confirms the expert on public procurement Alexei Fedorov: “And if the drug has not been purchased at the expense of the federal funds of the program, then the region is still obliged to provide them with the patient – within the framework of the regional benefits. But, firstly, the regions cannot be purchased at prices such as the federal center: due to small volumes, they offer prices significantly higher for the same drugs. Secondly, patients suffer due to interruptions in therapy, sometimes even forced to achieve their medicines in court. ”

Due to the need to treat orphan patients falling under the VNS program, the regions have less money for residents with other diseases, says Mr. Fedorov, and the healthcare system as a whole suffers from this. Therefore, additional funding “14 VNS” seems to him “a rational decision”, from which patients, regions, and the federal center will win.

The press service of the Ministry of Health of the Russian Federation informed Kommersant that the purchase of drugs in the framework of the program “has already been carried out in the amount of 70–90%”. Now « additional purchase measures are being held to satisfy 100% per annum. » Separate drugs, for example, for patients with hemophilia, will be purchased after manufacturers re -register maximum vacation prices for them.

The Ministry of Health also noted that the “average residue” of drugs for people with diffused sclerosis, malignant neoplasms of lymphoid, hematopoietic and related tissues, as well as hemophilia “ranging from three to seven months”. If necessary, drugs are redistributed between the regions, the ministry emphasized. The department added that it always “promptly reacts to appeals from the All -Russian Union of Patients, as well as appeals from other patient organizations in the event of a defect in a particular drug for the treatment of individuals, patients of 14 VNS”.

Natalia Kostarova