Published on 30 May 2022

FIRST SECTION

Application no. 43125/21 Anna Valeriyevna KOROBEYNIKOVA against Russia lodged on 30 August 2021 communicated on 9 May 2022

SUBJECT MATTER OF THE CASE

The applicant, Ms Anna Valeriyevna Korobeynikova, is a Russian national, who was born in 1994 and lives in Yalta, Crimea. She is represented before the Court by Ms A. Kile, a lawyer practising in Moscow.

The applicant suffers from spinal muscular atrophy (“SMA”), a rare genetic disease which results in motor neuron death causing inefficiency of the major bodily organs. There are four types of SMA with different levels of severity. The applicant suffers from intermediate form of the illness – type 2 SMA – with shortened life expectancy, which can range from early childhood to adulthood. She cannot sit without support, stand, walk or eat without assistance and she experiences breathing difficulties. From her childhood the applicant was assigned the status of a person with disability group 1, which is assigned to persons with the severest forms of disability.

On 17 December 2020 the applicant was prescribed treatment with the medication Spinraza ( Nusinersen ), one of the very few curative treatments available for that condition. Treatment with Spinraza costs around 635,000 euros (EUR) in the first year and around EUR 318,000 each year thereafter.

According to Article 83 § 9 of Federal Law No. 323 On Basics of Health Protection of the Citizens in the Russian Federation, persons suffering from life-threatening chronic progressive rare diseases which cause reductions in life expectancy or which lead to a disability are entitled to receive such treatment free of charge if a medical board composed of medical specialists from a State hospital prescribes it.

On 5 March 2021 the “Central District Court of Simferopol” acknowledged the applicant’s entitlement to be treated with Spinraza with the cost covered by the authorities, and ordered the judgment to have immediate effect.

Owing to the non-enforcement of the judgment in her favour the applicant applied to the Court and sought an interim measure under Rule 39 of the Rules of Court. The request was granted on 31 August 2021 and the Court indicated “ to the Government of Russia, under Rule 39, that they should ensure the applicant’s access to the medical treatment appropriate to her condition as determined by her attending medical practitioners and to secure the enforcement of the judgment of the Central District Court of Simferopol of 5 March 2021 insofar as it is binding upon the national authorities ”.

In her letter of 17 October 2021 the applicant’s representative informed the Court that the applicant had not yet received any information from the authorities in respect of enforcement of the court’s decision.

In their letter of 3 November 2021 the Government submitted that the applicant had been admitted to hospital on 27 September, 13 and 28 October 2021 and on each of those occasions treated with Spinraza ; the next dose would be administered to the applicant on 2 December 2021.

QUESTIONS TO THE PARTIES

1. Was the judgment of the “Central District Court of Simferopol” of 5 March 2021 enforced and if so, when? What was the reason and legal basis for the alleged delay in the enforcement proceedings? Was the applicant’s 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, § 168-73, 1 July 2014)?

2. What bearing does the alleged delay in the treatment of the applicant with Spinraza have on her health? Has there been a violation of Article 3 of the Convention on account of the applicant’s delayed access to the prescribed treatment (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)?

3. Did the applicant have at her disposal effective domestic remedies in order to ensure the proper and timely enforcement of the domestic court’s judgment in her favour or to obtain adequate redress for delayed enforcement, as required by Article 13 of the Convention?

4. Did the alleged failure to provide the applicant with Spinraza treatment in a timely fashion amount to a violation of her right to respect for her private life within the meaning of Article 8 § 1 of the Convention?

5. Given the Government’s response to the Court’s decision to indicate interim measures 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 individual application, as guaranteed by Article 34 of the Convention (see, mutatis mutandis , Salakhov and Islyamova v. Ukraine , no. 28005/08, §§ 216 ‑ 24, 14 March 2013)?