In Lviv, the city program for providing medications to children with spinal muscular atrophy (SMA) has been expanded. Now adults with SMA will also be able to receive such help for free.
This was reported by the Lviv City Council, Ukrinform reports.
“A drug program for children with spinal muscular atrophy is urgently needed. But it is also important to expand this program not only to children, but also to adults, since there is an adult patient in our community who needs such expensive medications. And now he, too, will be able to get the medicine for free: half of the amount will be reimbursed by the city, and half by; Roche company,” noted Marta Matyushko, head of the city health department.
Let us remind you that in the Lviv community there are children with SMA types 1 and 2 -. that is, severe types of this disease. Since October 2023, the free drug Evrysdi (risdiplam) has been available at the state level only for patients with SMA type 1. Therefore, four more children with SMA type 2 living in the Lviv community were provided with free medicine thanks to the international pre-registration access program, which the city implemented jointly with the Swiss pharmaceutical company Hoffmann-La Roche. But this program ended last year. Therefore, in order to help those patients from SMA who do not fall under the state program, in 2023 the Lviv City Hall signed a memorandum of cooperation with the pharmaceutical company Roche Ukraine. for 2024. According to the memorandum, for each package of the drug purchased with funds from the city budget, the Roche Ukraine company provides additional packaging free of charge.
As you know, 29-year-old Lvov Nazariy Gusakov from Lvov is diagnosed with SMA, he was diagnosed at one year and two months. With age, the disease has led to impairment of the musculoskeletal system, and now he can only move his head and fingers. Despite this, Nazar – ndash; social activist. Residents of Lvov know him as the founder of the community “How does Levandovka live?” Thanks to his efforts, ramps appeared in the area, roads and curbs were improved, and local areas were repaired. Now he needs another treatment worth three million hryvnia. The man announced a collection for treatment.
As Ukrinform reported, in September the Ministry of Health received a rare and expensive drug “Spinraza” as humanitarian aid, which is used during the treatment of patients with spinal ulcers. (SMO). The medicine was distributed to six regions of Ukraine.
Photo: Lviv City Council