The Kyiv City State Administration has refused to buy the drug "Eurisi" for patients with spinal muscle atrophy (SMA) , although it is provided by the city health care program for 2024-2025 . Because of this, residents of the capital submitted a petition demanding that patients provide vital medicines.
Adult patients and parents of children with a rare genetic disease stated that the Kyiv City State Administration refused to buy expensive medicines despite the city target program.
In a petition on the website of the Kyiv City Council, the locals Pavel Madrenko calls on the capital officials to continue the purchase of medicines.
Kiev notes that the Program of the Capital Authority in the field of health care for 2024-2025 provides for the purchase of the drug "Eurussi". The drug is intended for the treatment of manifestations of spinal muscular atrophy - an orphan disease that causes a gradual weakening of the muscles throughout the body.
Why don't the KSCA buy a cura medication?
The Public Union of Orphan Disease of Ukraine stated that in January 2025 the Department of Health of Kyiv allegedly refused to purchase medicines for SMA patients. Such a decision was allegedly explained by the requirements of the Cabinet of Ministers Resolution No. 333.
However, the text of the document states that its requirements do not apply to the purchase of medicinal products that buy local state (military) administrations for the implementation of regional programs.
" The continuity of treatment is critical: it depends on the preservation of motor functions and a chance for a full life ," - added in "Orphan diseases of Ukraine".
The petition author calls the KSCA's decision not to buy a medication against SMA "false" and requires previously defined purchases.
Kiev Mikhail Storozhuk said that his daughter Lara has a diagnosed SMA. Because of this, the girl does not walk, normally drives only her hands and cannot always hold her head.
“If the funding is not continued, the parents of the children, in particular, will need to look for UAH 270 thousand a month to provide life (patients with SMA - ed.). Or children will die. Slowly and hard. From respiratory arrest, because the muscles will stop working.
We do not ask for money, now we only need to sign a petition and give the case of public publicity , ”Mikhail Storozhuk wrote.
What kind of KSCA program is this?
In October 2023, the KSCA approved the program "Support and Development of the Capital Health Care" for 2024-2025. In the text of the document, the list of tasks and measures provided for the provision of medicines with patients with spinal muscle atrophy.
The authors of the program noted that patients under dispensary supervision, in particular with diagnosed orphan diseases, require continuous treatment. However, the state medical guarantor program does not always fully compensate for the costs of their treatment.
"At the same time, the provision is carried out incompletely or late, which can adversely affect the provision of continuous treatment of patients," the KSCA was recognized.
Therefore, the City Hall provided in 2025 to buy medicines for people with SMAs. More than 401 thousand hryvnias were laid from the capital of the capital. The contractor was identified by the Kyiv Department of Health and local communal property.
It was expected that the funds should be spent 35 patients.
We will remind, in Ukraine for the first time purchased drugs for patients with spinal muscle atrophy in 2023. Patients with the first type of SMA and newborns were able to get expensive medicines that can be taken at home on their own.
As of the end of November 2023, 33 patients received drugs under the state program.
