Kyiv, 28 February 2019 – Today, people all over the world are raising their voices to commemorate World Rare Disease Day. About 6 per cent of the world’s population are living with rare diseases, meaning that this is an issue that requires serious attention. About 5 per cent of Ukraine’s people are living with rare diseases. Given the “no one left behind” approach introduced by Agenda 2030, the United Nations Development Programme (UNDP) in Ukraine is supporting patients with orphan diseases to enable provision of life-saving medicines.
“Mostly, here in Ukraine children are most in need of support, as well as effective and quality treatment: these are the main common goals to be achieved. That is why we are glad to stand up for the rights of patients with rare diseases and work with UNDP to ease access to the medicines,” comments Tetiana Kulesha, head of civil society organization Orphan Diseases of Ukraine Council.
Health is a fundamental human right, and this is intrinsically linked with access to affordable medicines and care. UNDP is assisting the Government of Ukraine to fulfill its obligations towards its citizens regarding access to medicines. Currently, UNDP in Ukraine is procuring medicines for 12 rare disease programmes, a significant advance on 2016, when procurement was only for two programmes. For some programmes, UNDP in Ukraine has managed to secure dramatic price reductions. Now some medicines within the dwarfism programme are up to five times cheaper than they were five years ago.
Meanwhile, procuring medicines such as Adalimumab, a biosimilar authorized by the European Medicines Agency, means that UNDP is ensuring that patients receive quality treatment at a lower cost. In addition, while procuring a range of medicines for rare diseases, UNDP is striving to utilize a long-term agreements (LTAs) approach, to achieve better prices. As of yet there are 18 LTAs in place: this is allowing more patients to receive life-saving medicines.
“Advocating for treatment of rare diseases further deepens the established partnership between patient organizations and UNDP, at local and national levels. We believe that by working together we can significantly strengthen Ukraine’s healthcare system for the benefit of those who need it most,” says Blerta Cela, UNDP Deputy Country Director.
Yuliia Samus, Communication Specialist, UNDP Ukraine, +38 097 139 14 75, firstname.lastname@example.org, email@example.com