Patient organizations ask to unblock resources for purchasing innovative drugs for patients with orphan diseases
Representatives of public associations protecting the rights of patients with orphan and oncological diseases are reporting a critical situation with their provision of medicines.
"For many years, the problem of providing innovative drugs that give a chance for life to Ukrainians with oncology and rare diseases was not solved in Ukraine at the state level and was given over to territorial communities, and became a burden for the patients themselves ... And purchases within the budgets of territorial communities ran into either a lack of funds or bureaucratic obstacles. One of these obstacles was caused by Cabinet of Ministers resolutions No. 333 and No. 34, which made it practically impossible from the beginning of 2024 even those purchases of innovative drugs that were carried out by capable territorial communities at their own expense," says the press release for the press conference entitled "Patient organizations ask the state to unblock resources for purchase of innovative drugs for patients with oncological and orphan diseases," which took place at the Interfax-Ukraine agency on Friday.
Through the joint efforts of patient organizations, the medical community, and the support of healthcare managers, it was possible to overcome this legal conflict, but the problem was only partially resolved.
"We won the fight to amend Resolution No. 34, which limited the right of communities to purchase innovative drugs using local budget funds. But even after that, the money never fully started working locally. In connection with the chaos in the State Enterprise ‘Medical Procurement of Ukraine,’ this looks like a deliberate and systemic blocking," said Tetiana Kulesha, head of the board of the public union Orphan Diseases of Ukraine.
In August 2025, for the first time in many years, Ukraine made an attempt to solve the problem of providing medicines to patients with orphan diseases and cancer patients centrally at the state level: we are talking about the budget amendments adopted by the Verkhovna Rada on August 20, 2025, which allocated UAH 3.1 billion for the Ministry of Health to purchase such medicines. However, centralized purchases have not yet begun.
"If the planned funds in the state budget are actually allocated, they will save lives after putting things in order in the State Enterprise Medical Procurement of Ukraine. Unfortunately, we have entered another transition period, when local governments do not receive information about real purchases of medicines from the central budget for possible support of patients in their communities. I call on the Ministry of Health of Ukraine to quickly clean up the ‘Augean stables’ in the State Enterprise Medical Procurement of Ukraine that block resources, and to provide for seriously ill patients," said Viktor Serdiuk, President of the All-Ukrainian Charitable Organization Council for the Protection of Rights and Safety of Patients.
The position of organizations protecting patients with orphan and oncological diseases is that the changes to the 2025 budget, although correct, are a temporary solution. They believe that the best solution is to adopt a separate balanced law and cite as an example the draft law "On Amendments to the Law of Ukraine "On the State Budget of Ukraine for 2025" regarding overcoming the critical shortage of drugs for seriously ill patients" No. 13308 of May 22.