At an extraordinary session, the Lviv Regional Council supported an appeal to the Ministry of Health of Ukraine demanding that patients with Duchenne muscular dystrophy be provided with access to modern therapy, diagnostics, treatment and rehabilitation.
The document stresses that Ukraine still lacks an adequate systemic programme to provide such patients with modern medicinal products. As a result, families are forced to seek treatment options abroad on their own, cover substantial costs and resolve access to therapy individually, which creates unequal conditions depending on the financial means of the families.
The appeal notes that medicines for the treatment of Duchenne muscular dystrophy have already been registered in the European Union. In particular, it refers to the medicinal product Agamree (vamorolone) by Santhera Pharmaceuticals, which has European registration and, according to the European Medicines Agency, is indicated for the treatment of patients from 2 years of age. It also mentions the medicine Duvyzat (givinostat) by Italfarmaco S.p.A., which received registration in the EU in 2025 and is intended for the treatment of patients who are able to walk independently, aged from 6 years and who are simultaneously receiving corticosteroid therapy.
Deputies of the Lviv Regional Council are asking the Ministry of Health of Ukraine to work on ensuring access for Ukrainian patients with Duchenne muscular dystrophy to the medicines Agamree (vamorolone) and Duvyzat (givinostat), and also to initiate consultations with Santhera Pharmaceuticals and Italfarmaco S.p.A. regarding their state registration and availability in Ukraine.
Separately, the appeal proposes considering the possibility of centralised procurement or the use of other mechanisms provided for by law in order to supply these medicines to children with Duchenne muscular dystrophy who have the relevant medical indications. Deputies also insist on involving representatives of patient organisations and the public in shaping state policy on access to modern therapy for such patients.