Communicated on 2 March 2021 Published on 22 March 2021

THIRD SECTION

Application no. 28486/20 Roman Ruslanovich PETRUKHIN against Russia lodged on 10 July 2020

STATEMENT OF FACTS

The applicant, Mr Roman Ruslanovich Petrukhin , is a Russian national, who was born in 2011 and who lives in Chkalovskiy settlement in the Amur Region. He is represented before the Court by Ms D. Latypova residing in the town of Chelyabinsk.

The facts of the case, as submitted by the applicant, may be summarised as follows.

In March 2012 Mr R. Petrukhin was diagnosed with the second 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 Mr R. Petrukhin 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).

On an unspecified, date being unable to afford treatment with Spinraza for her child, the mother of Mr R. Petrukhin applied to the Amur Regional Children Hospital ( Амурская Областная Детская Клиническая Больница ) to have that treatment be prescribed to her son at the expense of the health care authorities.

On 29 November 2019 the medical board of the Amur Regional Children Hospital granted the application. The medical board took into account the gravity of Mr R. Petrukhin ’ s condition, who at the time could not stand or walk, had low strength of muscles, scoliosis, deformed chest, talipes equinovalgus , tendon contractions, and no tendon reflexes.

On 6 February 2020 the medical board of the Octyabrskiy Hospital ( ГБУЗ АО Октябрьская больница ) confirmed that Mr R. Petrukhin was in need of Spinraza .

On an unspecified date the Oktyabrskiy District prosecutor ’ s office acting in Mr R. Petrukhin ’ s interest lodged with the Blagoveshensk Town Court (“Town Court”) a claim against the Amur Regional Ministry of Health (“the Ministry”). The claimant asked the Town Court to impose on the Ministry an obligation to provide Mr R. Petrukhin with Spinraza free of charge.

The Ministry contended that Mr R. Petrukhin was not entitled to the treatment free of charge and that in any event, the Russian Ministry of Health, not the regional authorities should be the defendant in the case, because it was responsible for the allocation of relevant funds.

On 8 April 2020 the Town Court granted the claim. It held that Mr R. Petrukhin as a disabled child was entitled to medical treatment with Spinraza free of charge. The Town Court imposed an obligation on the Ministry to provide him with Spinraza in line with the decision of the medical boards of 29 November 2019 and 6 February 2020. The court ordered the immediate execution of the judgment.

Later, the Ministry applied to the Town Court seeking the adjournment of the enforcement proceedings. It referred to the complexity of the enforcement proceeding, and the lack of budgetary means. The court granted the request on 29 May 2020 and set up a new deadline for the execution of the judgment – 31 December 2020. The appeal instance, the Amur Regional Court, quashed that decision on 3 July 2020 and held that the judgment should be executed before 1 November 2020.

On 10 July 2020 Mr R. Petrukhin ’ s representative applied for interim measure under Rule 39 of the Rules of Court.

On 15 July 2020, the application was granted. The Court indicated to the Russian authorities that they should ensure Mr R. Petrukhin ’ 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 April 2020 insofar as it is binding upon the national authorities.

According to a medical certificate of 10 August 2020, Mr R. Petrukhin was at high risk of developing breathing troubles and pneumonia which may result in respiratory insufficiency and death. It appears that the treatment with Spinraza has not been given to him yet.

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).

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).

COMPLAINTS

Mr R. Petrukhin complains that the lack of access to treatment with Spinraza and indifference of the authorities resulted in his physical and mental suffering, amounted to treatment proscribed by Article 3 of the Convention, and violated his rights under Article 8 of the Convention.

He claims that continuous non-enforcement of the judgment delivered by Blagoveshensk Town Court on 8 April 2020 breached Article 6 of the Convention and that in breach of Article 13 of the Convention he has no effective remedies in respect of his grievances.

He also claims that the adjournment of the enforcement proceedings at the authorities ’ initiative breached his rights under Article 8 of the Convention.

Lastly, he complains under Article 34 of the Convention of the authorities ’ failure to comply with the interim measure issued by the Court on 15 July 2020 .

QUESTIONS TO THE PARTIES

1. What was the long-term effect of the delayed treatment with Spinraza on Mr R. Petrukhin ’ s health and the lack of such treatment as ordered by the Town Court between 8 April and 29 May 2020 and since 1 November 2020? Did the lack of such treatment result in his physical and (or) mental sufferings? If yes, did they reach the “minimum level of severity”? If 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 Blagoveshensk Town Court of 8 April 2020 enforced and if so, when? What was the reason and legal basis for the alleged delay in the enforcement proceedings? What was the risk for Mr R. Petrukhin associated with the delay? Was his right under Article 6 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)? Did Mr R. Petrukhin have at his disposal, in accordance with Article 13 of the Convention, 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 Gerasimov and Others , cited above, §§ 167-66)?

3. Did the alleged failure to provide Mr R. Petrukhin with Spinraza treatment in a timely fashion amount to a violation of his right to respect for his private life within the meaning of Article 8 § 1 of the Convention?

4. Given the Government ’ s response to the Court ’ s decision to indicate, on 15 July 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 Mr R. Petrukhin ’ 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)?