Legal disputes are on the rise in Russia as adult patients with rare (orphan) diseases frequently sue regional authorities for their failure to provide free medications. This growing problem highlights a systemic paradox, where the very success of a state fund in treating children with these conditions inadvertently creates a gap in care once they reach adulthood.
According to Kommersant, Russia has experienced a significant increase in lawsuits filed due to regional authorities` refusal to procure medications for adult patients suffering from rare diseases. In 2024, courts handled 22% more such claims than the previous year. Experts point to a crucial paradox: the effective operation of the state fund «Krug Dobra» (Circle of Kindness) is an indirect contributor to this issue. This fund successfully provides free medications to «orphan» patients up to 19 years old, often preventing the onset of disability. However, upon reaching adulthood, these patients are transferred to regional healthcare systems, where free treatment is typically accessible only to those with a confirmed disability status. While patient advocacy groups firmly believe this disability requirement should be abolished, they also acknowledge that regional budgets often lack sufficient funds to cover the high costs associated with rare disease treatments.
Specifically, in 2024, Russian courts reviewed 127 cases concerning the denial of benefits and state guarantees for orphan patients, a notable increase from 99 cases in 2023. These statistics were compiled by Natalya Smirnova, a lawyer and member of the expert council on orphan diseases under the State Duma`s Health Protection Committee, utilizing data from prominent legal databases such as «Consultant Plus,» «GARANT,» and GAS «Pravosudie.» The trend continues into 2025, with 36 such cases already reviewed in the first quarter, averaging over 10 similar lawsuits per month.
Ms. Smirnova underscored that the overwhelming majority of these plaintiffs are adult patients. Over the past two years, they have collectively filed a total of 220 lawsuits, whereas children are involved in a «minimal number» of cases, highlighting the disparity in access to care for different age groups.
It is important to understand that «orphan» patients under the age of 19 receive their necessary medications through the state fund «Krug Dobra.» After they turn 19, the responsibility for their treatment funding shifts to federal and regional budgets. The fund provides support for patients with 96 distinct conditions, while the state assumes responsibility for treating only 28 of these: 11 diagnoses are covered under a federal program, and an additional 17 are covered by regional budgets. A significant regional restriction further complicates matters: free medications are typically provided only to patients with first or second-group disabilities, as the entitlement is unfortunately tied to disability status rather than the actual medical necessity of the treatment.
Ms. Smirnova`s analysis reveals that approximately 78% of all lawsuits relate to diseases not included in the existing 28 state programs. These conditions include, for example, neurofibromatosis type 1, spinal muscular atrophy, hypophosphatasia, lysosomal acid lipase deficiency, familial Mediterranean fever, short bowel syndrome, and X-linked dominant hypophosphatemic rickets. Ironically, many patients with these severe diagnoses often do not have a disability status, consequently rendering them ineligible for free medication from regional authorities. Experts interviewed by Kommersant explain that this paradox stems from the success of the «Krug Dobra» fund. Anna Chistoprudova, founder of the «22/17» organization for neurofibromatosis patients, elaborates: «The earlier a child commences therapy, the more positive treatment outcomes we achieve, meaning we prevent them from becoming disabled. However, upon turning 19, if they do not have a disability, patients frequently find themselves outside the medication supply system and are compelled to discontinue their vital treatment. This inevitably leads to their eventual disability, inability to work, and full participation in society.»
She further points out that over 600 children with neurofibromatosis in Russia are currently receiving treatment through «Krug Dobra.» In 2025, 37 of these individuals reached the age of 19 and transitioned out of the fund`s care, with at least 42 more expected to do so next year. According to Ms. Chistoprudova, the primary hurdle preventing the continuation of treatment for these young adults is precisely the requirement of a disability status.
Irina Myasnikova, Chairperson of the Board of the All-Russian Society for Rare Diseases, informed Kommersant that the patient community has made numerous appeals to government authorities, urging them to make therapy accessible for adult orphan patients without requiring disability status. However, these efforts have, to date, not yielded the desired results.
Orphan Patients Request More Funding for Medication Procurement
«The challenge of providing care for adult patients is further compounded by the inability to accurately assess their actual therapeutic needs due to the absence of comprehensive patient registries—complete lists of such individuals. This remains another critical issue that requires a solution,» states Ms. Myasnikova. Anna Chistoprudova concurs, noting that Russia currently lacks a unified system for providing medical care to adult orphan patients, effectively forcing each individual to advocate for themselves. She specifically commends authorities in the Kemerovo, Voronezh, Novgorod, and Moscow regions, Perm Krai, and St. Petersburg, for their efforts to support adult patients transitioning from «Krug Dobra.» However, she clarifies, «Again, this primarily benefits patients who already possess a disability. If there is no disability, or if only a third-group disability is assigned, the chances of continuing treatment are significantly reduced. We are observing this unfortunate reality in practice right now.»
According to the State Duma expert`s calculations, executive authorities of the constituent entities responsible for healthcare are most frequently named as defendants in lawsuits concerning violations of patient rights. Patients also file lawsuits against medical organizations, typically those providing care at their place of residence. The «Krug Dobra» fund itself was involved as a defendant in only one legal proceeding, which was ultimately dismissed. Over the analyzed period, 68% of patient lawsuits were fully granted, 26% were partially granted, and 6% were denied. Natalya Smirnova emphasizes that, as a consequence, the judicial system is de facto performing a law enforcement function that is not inherently its role. She elaborates, «A court decision becomes a legal fact, obligating the Ministry of Health of a Russian region to allocate funds for a specific patient`s medication, whereas this obligation should exist a priori based on legal norms and should not require judicial intervention.»
