Communicated on 22 January 2021
\nPublished on 8 February 2021<\/p>\n
THIRD SECTION
\nApplication no. 41295\/20
\nFedor Maksimovich MILAYEV
\nagainst Russia
\nlodged on 18 September 2020
\nSTATEMENT OF FACTS<\/p>\n
The applicant, Mr FedorMaksimovichMilayev, is a Russian national, who was born in 2015 and lives in the town of Ust-Labinsk, the Krasnodar Region. He is represented before the Court by Ms D. Latypova residing in the town of Chelyabinsk.<\/p>\n
A. The circumstances of the case<\/strong><\/p>\n The facts of the case, as submitted by the applicant, may be summarised as follows.<\/p>\n 1. The applicant\u2019s medical condition and the treatment prescribed<\/em><\/p>\n In October 2016 the applicant was diagnosed with the first type of spinal muscular atrophy (\u201cSMA\u201d), a rare genetic disease which results in rapid motor neuron death\u00a0causing inefficiency of the major bodily organs. On an unspecified date the applicant was assigned the status of a disabled person.<\/p>\n One of the very few curative treatments available for his condition is Spinraza (Nusinersen). The treatment with that medication costs around 635,000 euros (EUR) in the first year and around EUR 318,000 each year thereafter.<\/p>\n According to domestic law, disabled minors are entitled to receive such treatment free of charge, if a medical board composed of several medical specialists from a State hospital, prescribes it (see below).<\/p>\n Being unable to afford treatment with Spinraza the applicant\u2019s mother applied to the Veltishev Research and Clinical Institute for Pediatrics at the Pirogov Russian National Research Medical University (\u201cthe Institute\u201d) in early 2020. She asked treatment with Spinraza at the expense of the health care authorities be prescribed to the applicant.<\/p>\n On 21 February 2020 the medical board composed of the Institute\u2019s deputy head, the head of a medical department, a head of a medical unit and three doctors, granted the application. The medical board took into account the gravity of the applicant\u2019s condition, who at the time was able to keep the head upright no more than for several seconds, was unable to sit on his own, had deformed chest and feet.<\/p>\n 2. The attempts to obtain the treatment<\/em><\/p>\n On 27 March 2020 the applicant\u2019s mother requested the Krasnodar Regional Ministry of Health (\u201cthe Ministry\u201d) to provide her son with Spinraza in line with the prescription by the medical board.<\/p>\n By letters of 28 February and 17 March 2020, the Ministry replied that it had taken certain measures to obtain Spinraza (for example, they applied for allocation of additional financial means). The measures had not had any tangible results.<\/p>\n On an unspecified date in 2020 the applicant\u2019s mother on the applicant\u2019s behalf lodged a claim against the Ministry with the Pervomaiyskiy District Court of Krasnodar (\u201cthe District Court\u201d). She asked the court to impose on the Ministry an obligation to provide the applicant with Spinraza free of charge.<\/p>\n The Ministry contended that the applicant was not entitled to the treatment free of charge.<\/p>\n On 8 June 2020 the District Court granted the claim. It held that the applicant as a disabled child was entitled to medical treatment with Spinraza free of charge and that despite the argument by the Ministry, the absence of Spinraza in the list of vitally important medicines should not prevent his access to it. The District Court imposed an obligation on the Ministry to provide the applicant with Spinraza in line with the decision of the medical board of 21 February 2020. The District Court ordered immediate execution of the judgment.<\/p>\n Later, the Ministry applied to the District Court seeking the adjournment of the judgment\u2019s execution. It referred to the complexity of the enforcement proceeding, and the lack of budgetary means. The court dismissed the request on 28 July 2020. It held that there had been no insurmountable obstacles in the execution of the judgment and that the prompt execution was particularly important owing to the applicant\u2019s health condition.<\/p>\n In the meantime, on 8 July 2020 the Ministry challenged the judgment on appeal before the Krasnodar Regional Court. It appears that the latter dismissed the challenge.<\/p>\n 3. Interim measure<\/em><\/p>\n On 18 September 2020 the applicant\u2019s mother applied for interim measure under Rule 39 of the Rules of Court.<\/p>\n On 21 September 2020, the application was granted. The Court indicated to the Russian authorities that they should ensure the applicant\u2019s access to the medical treatment appropriate to his condition as determined by his attending medical practitioners and to secure enforcement of the judgment of 8 June 2020, insofar as it was binding upon the national authorities.<\/p>\n B. Relevant domestic law<\/strong><\/p>\n 1. Legal status of Spinraza<\/em><\/p>\n On 16 August 2019 Spinraza was included in the State Registrar of Medicines in the group of \u201cOther medication for treatment of diseases relating to musculoskeletal system\u201d. The instruction for the use of Spinraza stated that it is indicated for the treatment of SMA in paediatric and adult patients.<\/p>\n SMA is not included in the list of \u201cLife threating and chronic rare (orphan) diseases resulting in the shorten longevity or disability\u201d (approved by the Russian Government on 26 April 2012 by its Order no.\u00a0403), which entitles people with the relevant medical condition to free medication.<\/p>\n Until 1 January 2021 Spinraza was not in the list of \u201cVitally important and essential medicines\u201d (approved by the Order of the Russian Government no.\u00a02406-p of 12\u00a0October 2019). On 23 November 2020 the Government ordered Spinraza to be included in that list from 1 January 2021 (Order no.\u00a03073-p of 23 November 2020).<\/p>\n 2. Free provision of medicines to disabled persons and prescription of medical products not included in a standard of medical assistance<\/em><\/p>\n According to Decree no.\u00a0890 of 30\u00a0July 1994 by the Government of the Russian Federation (\u201cDecree no.\u00a0890\u201d), people having a first-degree disability and disabled minors are provided with all medicinal products free of charge. Regional executive authorities are obliged to timely pay the medicines provided to the population free of charge on medical prescription (\u00a7\u00a7\u00a03-4 of the Decree).<\/p>\n Section 37 \u00a7 15 of the Federal Health Care Act no. 323-FZ of 21\u00a0November 2011 provides that prescription and use of medicinal products not included in a relevant \u201cstandard of medical assistance\u201d are allowed on medical grounds, upon a decision of a medical board.<\/p>\n The composition of a medical board and the scope of its competence are set out in Regulation of the Ministry of Health of the Russian Federation no.\u00a0502\u043d of 5 May 2012 \u201cOn establishing and functioning of a medical board\u201d. According to sections 8, 12 and 14 of the Regulation, a medical board is composed of its head, one or two deputy heads, a secretary, and several members (medical specialists).<\/p>\n 3. Compensation Act<\/em><\/p>\n According Section 3 (8) of the Compensation Act (Federal Law\u00a0no.\u00a068\u2011FZ of 30 April 2010, \u201cOn Compensation for Violation of the Right to a Trial within a Reasonable Time or the Right to Enforcement of a Judgment within a Reasonable Time), a person is entitled to claim compensation under that Act not earlier than after six months from the date when the judgment had to be enforced.<\/p>\n COMPLAINTS<\/strong><\/p>\n The applicant complains that the lack of access to treatment with Spinraza and indifference of the authorities resulted in his physical and mental suffering and amounted to treatment proscribed by Article 3 of the Convention.<\/p>\n He claims that continuous non-enforcement of the judgment delivered by the Pervomaiyskiy District Court of Krasnodar on 8 June 2020 breached Article 6 \u00a7 1 of the Convention.<\/p>\n He also claims that the adjournment request made by the domestic authorities before the District Court breached his right under Article 8 of the Convention.<\/p>\n The applicant furthermore claims that in breach of Article 13 of the Convention he has no remedies in respect of his complaints under Articles\u00a03 and 6 of the Convention.<\/p>\n Lastly, the applicant complains under Article 34 of the Convention of the authorities\u2019 failure to comply with the interim measure issued by the Court on 21 September 2020.<\/p>\n QUESTIONS TO THE PARTIES<\/strong><\/p>\n 1. What was the long-term effect of the delayed treatment with Spinraza on the applicant\u2019s health? Did the lack of such treatment result in his physical and (or) mental sufferings? If yes, did they reach the \u201cminimum level of severity\u201d? It yes, has there been a violation of Article 3 of the Convention on account of the lack of access to the prescribed treatment by the applicant (see, mutatis mutandis, Denis Vasilyev v.\u00a0Russia, no.\u00a032704\/04, \u00a7\u00a7\u00a0111\u201122, 17\u00a0December 2009 and R.R. v. Poland, no.\u00a027617\/04, \u00a7\u00a7 148\u201162, 26 May 2011)?<\/p>\n 2. Was the judgment of the Pervomaiyskiy District Court of Krasnodar of 8\u00a0June 2020 enforced and if so, when? What was the reason for the alleged delay in the enforcement proceedings? What was the risk for the applicant associated with the delay? Was the applicant\u2019s right under Article\u00a06 \u00a7 1 of the Convention violated on account of the alleged delay in the enforcement of that judgment (see Gerasimov and Others v.\u00a0Russia, nos.\u00a029920\/05 and 10\u00a0others, \u00a7 167-74, 1 July 2014)?<\/p>\n 3. Did the alleged failure to provide the applicant with Spinraza treatment in a timely fashion amount to a violation of the applicant\u2019s right to respect for his private life within the meaning of Article 8 \u00a7 1 of the Convention?<\/p>\n 4. Was the applicant entitled to claim compensation for the alleged delay in the enforcement of the judgment in his favour under Federal Law no.\u00a068\u2011FZ of 30 April 2010, \u201cOn Compensation for Violation of the Right to a Trial within a Reasonable Time or the Right to Enforcement of a Judgment within a Reasonable Time\u201d within the first six months from the date when the judgment in his favour entered into legal force? Did the applicant dispose in accordance with Article 13 of effective domestic remedies in order to ensure proper and timely enforcement of the domestic judgment in his favour or to obtain adequate redress for late enforcement (see Gerasimovand Others, cited above, \u00a7\u00a7 157-66)?<\/p>\n 5. Given the Government\u2019s response to the Court\u2019s decision to indicate, on 21 September 2020, an interim measure under\u00a0Rule 39\u00a0of the Rules of Court, has there been a hindrance by the State with the effective exercise of the applicant\u2019s right of application, ensured by Article 34 of the Convention (see, mutatis mutandis,Salakhov and Islyamova v.\u00a0Ukraine, no.\u00a028005\/08, \u00a7\u00a7\u00a0216-24, 14 March 2013)?<\/p>\n