Communicated on 9 February 2021 Published on 15 March 2021

FIFTH SECTION

Application no. 41714/20 M.G. and Y.G. against Ukraine lodged on 22 September 2020

STATEMENT OF FACTS

1 . The applicants, two Ukrainian nationals, are a child and his father. The first applicant was born in 2014 and the second applicant was born in 1985. They live in Kyiv. They were represented before the Court by Mr M. Tarakhkalo and Ms O.R. Chylutyan , lawyers practising in Kyiv.

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

3 . The first applicant suffers from a rare disease – spinal muscular atrophy (SMA – also known as Werding -Hoffmann disease), which causes severe, progressive muscle weakness , reduced muscle tone , problems with swallowing, and respiratory failure . Gradually the atrophy affects the muscles controlling breathing and swallowing, eventually ending with the early death of the patient.

4 . The first applicant began receiving medical care for his condition at the age of eight months and was certified as having the highest degree of disability recognised by Ukrainian law. He was provided with medical treatment at the Ukrainian Medical Rehabilitation Centre for Children with Organic Disorders of the Nervous System, at specialised neuropathological clinics in Kyiv, and at Kyiv Regional Children ’ s Hospital. According to the medical records, the first applicant is heavily disabled: he cannot walk, sit or eat without assistance. The health of the first applicant is constantly deteriorating. It was recommended that he receive specialised medical treatment with Nusinersen , a drug marketed under the name of “ Spinraza ”, which his doctors considered to constitute an effective means of treating SMA.

5 . On 11 January 2020 the Ministry of Health included Spinraza in the State register of drugs authorised for use in Ukraine. On 2 April 2020 the Ministry of Health declared that the wholesale price for Spinraza was 1,887,252.18 Ukrainian hryvnias (UAH) (about 55,215 euros) per ampoule. For the treatment of SMA, Spinraza must be given multiple times on a regular basis.

6 . The applicants lodged requests with the healthcare authorities for the first applicant to be provided with Spinraza at the public expense.

7 . On 18 June 2020 the Ministry of Health informed the applicants that Spinraza was a drug authorised in Ukraine, but that the funds available from the State budget were limited and could not cover the cost of everyone ’ s medicinal needs.

8 . On 5 October 2020 the Public Health Department of the Kyiv City State Administration informed the applicants that Spinraza was an expensive drug and that it had been impossible to purchase it with funds from the local budget.

9 . On 5 November 2020, the Court decided, in the interests of the parties and the proper conduct of the proceedings before it, to indicate to the Government of Ukraine, under Rule 39 of the Rules of Court, to ensure the applicant ’ s access to the effective medical treatment appropriate to his condition as recommended by his attending medical practitioners.

10 . Under Article 49 § 3 of the Constitution of Ukraine (1996), the State ensures effective and accessible medical care for all citizens. In State and municipal healthcare facilities, medical care is provided free of charge.

11 . Section 53-1 of the Law on the Fundamentals of Health-Protection Legislation provides that the State must take measures to prevent rare (“orphan”) diseases and organise appropriate medical care for citizens suffering from such diseases; those citizens are provided, continuously and free of charge, with appropriate medicines and dietary products, in accordance with the list and volumes approved by the Ministry of Health, and pursuant to the procedure established by the Cabinet of Ministers.

12 . Under paragraph 2 of the Order on the provision to citizens suffering from rare diseases of medicines and appropriate dietary products (“the Order”) (approved by the Cabinet of Ministers of Ukraine on 31 March 2015), citizens suffering from rare diseases should be provided with the medicines and appropriate dietary products specified by their medical prescriptions. Under paragraphs 3 and 4 of the Order, a decision on the provision of medicines and products to a particular citizen should be taken by a commission of the Ministry of Health (in the event that the related expenses are to be covered by the State budget) or by a commission appointed by the relevant regional healthcare department (if the related expenses are to be covered by the local budget). Under paragraph 6 of the Order, the continuous provision, free of charge, of medicines and dietary products to citizens suffering from rare diseases is carried out from the funds allocated for that purpose.

COMPLAINTS

13 . The applicants complained that the State authorities had failed in their obligation under Article 2 of the Convention to provide the first applicant with appropriate medical treatment in respect of his serious and rare illness, which posed a serious danger to his life. Specifically, they argued that the authorities had failed to furnish them with the drug Spinraza , which constituted an effective means of treating SMA illness. They furthermore complained that the State ’ s failure to take those measures had been contrary to Article 3 of the Convention. Lastly, relying on Article 13 of the Convention, the applicants complained of a lack of effective remedies in respect of the State ’ s failure to address their issue.

QUESTIONS TO THE PARTIES

1. What is the current state of health of the first applicant (the child)? The parties are invited to submit copies of the recent medical documents and, if available, copies of expert reports assessing the child ’ s health and specifying the exact diagnosis.

2. Can the second applicant (the child ’ s father) claim to be a victim of the alleged violations of Articles 2, 3 and 13 of the Convention, within the meaning of Article 34?

3. Did the applicants have at their disposal an effective domestic remedy for their Convention complaints, as required by Article 13 of the Convention? If so, have the applicants exhausted all effective domestic remedies, as required by Article 35 § 1 of the Convention? The parties are invited to provide relevant domestic case-law to this effect.

4. Has there been a breach of Article 2 of the Convention on account of the authorities ’ failure to provide the child with the specific medical treatment, as requested by the child ’ s father? In particular:

- Did the domestic law confer on the first applicant a right to be provided with the specific medical drugs free of charge?

- What are the conditions and procedure for providing the requested medical drugs to the first applicant by the public authorities?

5. Did the alleged failure by the domestic authorities amount to inhuman or degrading treatment of the first and/or the second applicant within the meaning of Article 3 of the Convention?