The capital has halted the procurement of medication for patients with spinal muscular atrophy
The lives of adults and children suffering from spinal muscular atrophy are at risk due to the refusal of the Kyiv City State Administration to purchase this essential medication.
This is stated in an electronic petition posted on the Kyiv City Council's website.
Spinal muscular atrophy (SMA) is a rare neuromuscular disorder characterized by progressive muscle atrophy, leading to early mortality. The petition authors note that the city's targeted program "Support and Development of the Capital's Healthcare Sector" allocates 401 million UAH in 2025 for the procurement of SMA medications.
“However, as of January 23, 2025, we have been informed by the Department of Health of the Kyiv City Council that there will be no procurement of medications for our children and adults suffering from SMA. They justify this decision with the Cabinet of Ministers of Ukraine Resolution No. 333 ‘On Certain Issues of State Regulation of Prices for Medicines and Medical Devices.’ However, this resolution clearly states that ‘the requirements of this resolution do not apply to the procurement of: medicines to be procured by local state administrations and their structural subdivisions for the implementation of measures of regional targeted programs approved in the established manner,’” the petition states.
Therefore, the decision of the city authorities not to conduct the procurement is erroneous and poses a threat to the lives of children and adults with SMA.
“We demand the procurement of EVRIZDI (Risdiplam) medications, which are critically necessary for our children and adults suffering from SMA. Halting treatment endangers the lives of patients,” warn the authors of the petition.