The “circle of goodness” has become wider

The wards of the state fund “Circle of Kindness”, which helps to provide medicines and medical devices to children with severe life-threatening diseases, will continue to receive assistance for another year after coming of age. This is an “additional opportunity” for the regions to make a “seamless” transfer of patients to the adult system, according to the Circle of Kindness. The fund told Kommersant that they are already accepting applications for providing young people with medicines and medical products. In addition, in 2023, the fund will take over the provision of medical care for children from the 14 High-Cost Nosologies program and the regional list of rare diseases, and will also begin to purchase expensive rehabilitation equipment.

The Circle of Kindness (created in 2021 on behalf of Vladimir Putin to provide medicines and medical devices to children with severe life-threatening, including orphan diseases) has begun accepting applications for continued drug provision of children who have reached the age of majority, and will continue to do so until the fund’s wards turns 19 years old. The decree on this was signed by Russian President Vladimir Putin on December 15. The fund reminds that the regions can start buying medicines themselves, immediately after the patient’s 18th birthday. But the extension of the provision for a year will be an “additional opportunity” for the regions to make a “seamless” transfer of patients to the adult system. In 2023, 258 wards of the Circle of Kindness will turn 18 or have already turned 18.

According to the estimates of the CECCM of the Ministry of Health, every year 70-100 patients with whom the foundation works reach adulthood. They should be provided with medicines, medical devices and technical means of rehabilitation at the expense of regional budgets. However, regions often refuse them due to lack of funds. “Kommersant” has already told how the ward of the “Circle of Good” Danil Sizov with Pompe disease cannot get treatment from the Oryol depzdrav.

Anastasia Tatarnikova, head of the House of the Rare expert assistance center, notes that the decision to extend the provision to 19 years does not change the purpose of the fund as established to provide treatment for children: “This is an exclusively organizational decision that gives a temporary backlash to the organization of the continuation of treatment at the expense of the region.”

On behalf of Vladimir Putin, from January 1, 2023, Krug Dobrob also committed to providing medicines to children with diseases from the federal list of 14 high-cost nosologies. Usually they are provided at the expense of the federal budget; the new decision is framed by an amendment to the law “On protecting the health of citizens”, which the president signed in early December. Thus, 16.8 thousand children from the VZN program will be added to the 5,150 wards of the Circle of Kindness. Commenting on this decision, the Ministry of Health of the Russian Federation noted that the “Circle of Kindness” is “an additional tool to ensure the uninterrupted supply of needy children with serious illnesses with the necessary medicines and medical devices.” The agency added that the fund “ensures prompt decision-making and deliveries.”

In addition, the fund will purchase medicines for children with other complex diseases, which are now included in the regional list of rare diseases and are not fully funded by regional budgets, said Alexander Tkachenko, Chairman of the Board of the Circle of Kindness. In total, there are 8,000 children on this list. At its regular meeting on February 2, the Foundation’s Expert Council approved a plan for considering diseases, medicines, medical devices, and types of assistance for inclusion in the lists. There are more than two dozen positions in the plan. In particular, these are Fabry disease, Niemann-Pick C disease, type 2 hereditary tyrosinemia, Evans syndrome, pulmonary hypertension, atypical hemolytic uremic syndrome and some other diseases; expansion of indications for the use of the drug Everolimus in tuberous sclerosis; expansion of the list of drugs for the treatment of Duchenne myodystrophy due to the drug Kasimersen. Among medical devices, for example, biodegradable and biointegrable implants are mentioned. “In order to make a balanced decision on the effectiveness of drugs in accordance with the decree of the government of Roszdravnadzor, three federal medical centers and the TsEKKMP of the Ministry of Health will have to provide their opinions,” Kommersant was told in the Circle of Good.

Elena Khvostikova, head of the Genome Patient Care Center, hopes that 50 underage Russians with Fabry disease will begin receiving help from the Circle of Kindness this year. She notes that these patients had to sue the regional authorities for years for the opportunity to receive therapy, during which time many of them became disabled. “The Fund, on the other hand, uninterruptedly provides its wards with medicines, without trials, without trials. Wrote applications and received medicines. A dream,” says Mrs. Khvostikova. She points out that the transfer of underage “orfans” under the care of the “Circle of Kindness” will not only improve their quality of life, but will also give regions more opportunities to provide medicines to other categories of patients in need. Anastasia Tatarnikova agrees that the transfer of all “rare” children under the wing of the fund evens out the overall accessibility of treatment: “Moreover, the fund, created to provide children primarily with innovative methods of treatment, has more flexible and rational mechanisms to open access to the latest and advanced medicines and technologies.” Alexander Tkachenko mentioned that thanks to the activities of the Circle of Kindness, fees for the treatment of seriously ill children in social networks have decreased by 90%.

The Decree of the President of December 26 also made it possible for the fund to form stocks of medicines not registered in Russia in a non-personalized way, that is, without being tied to specific recipients. The head of state also drew attention to the fact that children should have the opportunity to undergo rehabilitation. For this, according to Mr. Tkachenko, together with experts, the fund will develop mechanisms for paying for expensive technical means of rehabilitation and means for developing the musculoskeletal system. According to Elena Khvostikova, the Circle of Kindness has entered into an agreement with rehabilitation specialists and they are collecting information in the regions about the necessary funds.

Note that at the end of 2022, the government ordered to allocate a grant in the amount of almost 70 billion rubles to the fund. They will be sent, among other things, to the purchase of medicines, medical devices and technical means of rehabilitation, including those not registered in the country, but necessary for health reasons. According to Anastasia Tatarnikova, the fund has become a new engine for the development of the system of organizing medical care for “rare” patients. Elena Khvostikova believes that the style of work of the “Circle of Kindness” should be “a prototype for solving so many problems in the state.”

Natalya Kostarnova