Lviv Mayor Andriy Sadovyi handed over the first batch of medicines to Nazariy Gusakov, for which UAH 3.5 million was allocated from the city budget.
With these funds, the city purchased 14 vials of Risdiplam. The same amount of 14 vials will be provided free of charge by Roche Ukraine under the memorandum of cooperation signed last year – they double each package of the drug purchased by the city. That is, a total of 28 vials will be provided for the treatment period of 9 months (from June this year to March next year) for Nazar, who has SMA type 2.
Nazariy Gusakov, a 30-year-old Lviv resident, lives in Levandivka with his grandparents, while his mother and sister live in Milan. He has a rare disease: spinal muscular atrophy (SMA). The boy was born healthy, but the disease manifested itself later – at the age of 1 year and 2 months.
Nazar has a genetically confirmed diagnosis in Ukraine – SMA type 2. According to the city health department, only Nazar Husakov has been clinically confirmed to have adult SMA in Lviv. However, there may be more such cases.
While at the age of 6 Nazar could still sit unsupported and raise his arm, now he can only move his fingers and head. Without supportive treatment – injections, massages – Nazar’s condition is irreversibly deteriorating.
“Over the past 12 years, I have always followed my own difficult and unique path. I consciously chose to stay at home rather than leave. To build and improve it here – because this is my home. I have the best people by my side. We have been going for this for a long time, and it has happened: for some time it will be easier for me to maintain my condition with some of the medications. I am grateful to Andriy Sadovyi, MPs and everyone involved for this journey. Thank you for a part of evrysdi, which is a necessity to live,” said Nazar Gusakov.
“I sincerely wish you good health. We will help as much as we can,” concluded Lviv Mayor Andriy Sadovyi.
Nazar Gusakov is currently the communications manager of the NAVI (Natus Vincere) esports team, an ambassador of the Ukrainian Professional Esports Association, administrator of the group “What Levandivka Lives For”, and promotes inclusion in Lviv.
Nazar used to work three jobs and provide for his own treatment, but since the outbreak of full-scale war, he has only one of them. According to the guy, life is possible for SMA patients in Ukraine, but massages, injections, and rehabilitation sessions require 4-5 thousand euros a month. In addition, he needs to buy the drug Evrisdi (INN – rhydiplam), which can be taken at home – it costs $20,000 a month.
Reference.
Spinal muscular atrophy (SMA) is a rare genetic disorder that affects motor neurons in the spinal cord, causing muscle atrophy, breathing and swallowing problems. This disease is the most common genetic cause of death in children (it affects one or two babies out of ten thousand newborns). There are 4 types of SMA, of which the first and second are the most life-threatening.
In Ukraine, more than 200 children have a confirmed diagnosis of SMA. In Lviv, 12 children and 1 adult (Nazar Husakov) are registered with this diagnosis in healthcare facilities, of whom 3 children and 1 adult have the second type.
The state has committed itself to treating patients with type 1 SMA only. Therefore, in 2024, UAH 10.5 million was allocated from the city budget of the Lviv Municipal Clinical Hospital to provide vital medicines to patients with type 2 SMA.
And on 28 March this year, at the session of the Lviv City Council, the city’s programme for providing medicines to children with spinal muscular atrophy (SMA) was expanded – now adults with SMA can also receive such assistance free of charge: that is, now it is 1 adult – Nazar Gusakov.