Last Updated on February 9, 2021 by LawEuro
Communicated on 22 January 2021
Published on 8 February 2021
THIRD SECTION
Application no. 41295/20
Fedor Maksimovich MILAYEV
against Russia
lodged on 18 September 2020
STATEMENT OF FACTS
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.
A. The circumstances of the case
The facts of the case, as submitted by the applicant, may be summarised as follows.
1. The applicant’s medical condition and the treatment prescribed
In October 2016 the applicant was diagnosed with the first type of spinal muscular atrophy (“SMA”), a rare genetic disease which results in rapid motor neuron death causing inefficiency of the major bodily organs. On an unspecified date the applicant was assigned the status of a disabled person.
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.
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).
Being unable to afford treatment with Spinraza the applicant’s mother applied to the Veltishev Research and Clinical Institute for Pediatrics at the Pirogov Russian National Research Medical University (“the Institute”) in early 2020. She asked treatment with Spinraza at the expense of the health care authorities be prescribed to the applicant.
On 21 February 2020 the medical board composed of the Institute’s 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’s 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.
2. The attempts to obtain the treatment
On 27 March 2020 the applicant’s mother requested the Krasnodar Regional Ministry of Health (“the Ministry”) to provide her son with Spinraza in line with the prescription by the medical board.
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.
On an unspecified date in 2020 the applicant’s mother on the applicant’s behalf lodged a claim against the Ministry with the Pervomaiyskiy District Court of Krasnodar (“the District Court”). She asked the court to impose on the Ministry an obligation to provide the applicant with Spinraza free of charge.
The Ministry contended that the applicant was not entitled to the treatment free of charge.
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.
Later, the Ministry applied to the District Court seeking the adjournment of the judgment’s 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’s health condition.
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.
3. Interim measure
On 18 September 2020 the applicant’s mother applied for interim measure under Rule 39 of the Rules of Court.
On 21 September 2020, the application was granted. The Court indicated to the Russian authorities that they should ensure the applicant’s 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.
B. Relevant domestic law
1. Legal status of Spinraza
On 16 August 2019 Spinraza was included in the State Registrar of Medicines in the group of “Other medication for treatment of diseases relating to musculoskeletal system”. The instruction for the use of Spinraza stated that it is indicated for the treatment of SMA in paediatric and adult patients.
SMA is not included in the list of “Life threating and chronic rare (orphan) diseases resulting in the shorten longevity or disability” (approved by the Russian Government on 26 April 2012 by its Order no. 403), which entitles people with the relevant medical condition to free medication.
Until 1 January 2021 Spinraza was not in the list of “Vitally important and essential medicines” (approved by the Order of the Russian Government no. 2406-p of 12 October 2019). On 23 November 2020 the Government ordered Spinraza to be included in that list from 1 January 2021 (Order no. 3073-p of 23 November 2020).
2. Free provision of medicines to disabled persons and prescription of medical products not included in a standard of medical assistance
According to Decree no. 890 of 30 July 1994 by the Government of the Russian Federation (“Decree no. 890”), 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 (§§ 3-4 of the Decree).
Section 37 § 15 of the Federal Health Care Act no. 323-FZ of 21 November 2011 provides that prescription and use of medicinal products not included in a relevant “standard of medical assistance” are allowed on medical grounds, upon a decision of a medical board.
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. 502н of 5 May 2012 “On establishing and functioning of a medical board”. 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).
3. Compensation Act
According Section 3 (8) of the Compensation Act (Federal Law no. 68‑FZ of 30 April 2010, “On 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.
COMPLAINTS
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.
He claims that continuous non-enforcement of the judgment delivered by the Pervomaiyskiy District Court of Krasnodar on 8 June 2020 breached Article 6 § 1 of the Convention.
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.
The applicant furthermore claims that in breach of Article 13 of the Convention he has no remedies in respect of his complaints under Articles 3 and 6 of the Convention.
Lastly, the applicant complains under Article 34 of the Convention of the authorities’ failure to comply with the interim measure issued by the Court on 21 September 2020.
QUESTIONS TO THE PARTIES
1. What was the long-term effect of the delayed treatment with Spinraza on the applicant’s health? Did the lack of such treatment result in his physical and (or) mental sufferings? If yes, did they reach the “minimum level of severity”? 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. Russia, no. 32704/04, §§ 111‑22, 17 December 2009 and R.R. v. Poland, no. 27617/04, §§ 148‑62, 26 May 2011)?
2. Was the judgment of the Pervomaiyskiy District Court of Krasnodar of 8 June 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’s right under Article 6 § 1 of the Convention violated on account of the alleged delay in the enforcement of that judgment (see Gerasimov and Others v. Russia, nos. 29920/05 and 10 others, § 167-74, 1 July 2014)?
3. Did the alleged failure to provide the applicant with Spinraza treatment in a timely fashion amount to a violation of the applicant’s right to respect for his private life within the meaning of Article 8 § 1 of the Convention?
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. 68‑FZ of 30 April 2010, “On 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” 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, §§ 157-66)?
5. Given the Government’s response to the Court’s decision to indicate, on 21 September 2020, an interim measure under Rule 39 of the Rules of Court, has there been a hindrance by the State with the effective exercise of the applicant’s right of application, ensured by Article 34 of the Convention (see, mutatis mutandis,Salakhov and Islyamova v. Ukraine, no. 28005/08, §§ 216-24, 14 March 2013)?
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