The Circle of Good Foundation has seen a sharp increase in the amount of unspent funds in its accounts

The Circle of Good Foundation, which provides medicines to Russians under 18 years of age with rare diseases, has seen a sharp increase in the amount of unspent funds in its accounts. According to Kommersant’s calculations, the fund spent about 120 billion rubles over the year, while the amount of funds at its disposal by the beginning of 2024 had grown to 364 billion rubles. The dynamics may be due to the fact that new diseases and drugs are no longer actively included in the “Circle of Good” purchases. Experts believe that the remaining funds can be used to finance the treatment of adult patients, including those in the fund’s care who have passed the age of 18. Now this opportunity is only available for a year.

Since the creation of the “Circle of Goodness” in 2021 until now, 213 billion rubles have been allocated for the treatment of children with severe chronic diseases, including rare ones, the fund told Kommersant. The amount of funds spent doubled over the year – from 61 billion rubles. in 2022 to 121 billion rubles. by the end of 2023. This is partly due to the fact that the Circle of Good began to pay for the treatment of 16 thousand children who received therapy until 2023 under the state program “14 high-cost nosologies” (14 VZN), financed by the federal budget. The fund spent 21 billion rubles on such children for the entire 2023.

At the same time, for the third year already, the fund’s expenses have been lower than the funds received, and the unused balance of funding is carried over to the next year. In 2023, this gap has widened. According to Kommersant’s calculations, at the end of 2022, 131.3 billion rubles went to the Circle of Good. in the form of the unspent balance for the previous period, then in 2023 – already 155 billion rubles. In 2024, the fund should receive 33 billion rubles. from the reserve fund due to the likely increase in taxes collected on excess income, another 175.9 billion rubles. planned to be allocated from the budget. Thus, in 2024 the fund will be able to manage almost 364 billion rubles. The Circle of Good reported that they are still summing up the collections at the increased personal income tax rate for 2023, so it is too early to talk about final amounts.

According to Headway Company, purchases for the fund of registered drugs last year increased by 24% year-on-year, to RUB 50.1 billion. Almost half of this volume comes from drugs for patients with spinal muscular atrophy. FKU purchased Spinraza, Evrisdi and Zolgensma for the fund for 23.7 billion rubles, spending 48% more than a year earlier.

However, since 2023, only 1.15 billion rubles worth of new registered drugs have been purchased, or 2.3% of the total amount. Over the past year, the fund included only eight such drugs in the procurement list, not counting medical devices and rehabilitation products, while in 2022 – 13 new drugs. In October 2023, the chairman of the board of the Circle of Good, Alexander Tkachenko, said that it was planned to consider the purchase of a number of new drugs with an estimated cost of therapy of 40 billion rubles. in year.

Today, the “Circle of Goodness” list includes 89 diseases, 11 of them are included in the 14 VZN program, and the list of rare diseases on the Ministry of Health website includes 273 positions, and the process of diagnosing new diseases and developing innovative therapy is “actively moving,” says the head of the patient assistance center “Genome” Elena Khvostikova. According to her, the financial need will grow and the fund needs money “in reserve.”

According to Mrs. Khvostikova, the main problem is that many of the “Circle of Good” clients are deprived of the opportunity to continue treatment after 19 years. If the disease is not included in the list of 14 WNVs, then adult patients are transferred to the jurisdiction of regions, which often refuse to purchase expensive therapy, she points out. The Circle of Good says that the fund has been given the opportunity to continue providing care for patients for a year after reaching adulthood, so that the region has the opportunity to smoothly transfer patients to the adult healthcare system.

Polina Gritsenko