KYIV. Dec 1 (Interfax-Ukraine) – Some 33 Ukrainian patients with spinal muscular atrophy (SMA) types I, II and III are already receiving treatment with Spinraza from Janssen Pharmaceutica, the Ministry of Health reported.
At the same time, the department clarifies that in the autumn of 2023, the Ministry of Health received a second supply of the drug as humanitarian aid – 87 vials.
Thanks to this supply, 33 patients from Lviv, Dnipropetrovsk, Kharkiv, Odesa, Khmelnytsky and Kyiv regions, as well as patients from the Okhmatdyt, are already receiving treatment for SMA.
“The supplied quantity of drugs will be enough for about six months for this group of patients. In general, there is an agreement on continuous treatment of patients already receiving the drug for at least another two years. The Ministry of Health is negotiating on further donations,” the Ministry of Health clarifies.
The first comprehensive delivery of Spinraza took place in June last year. It costs about $100,000 per injection. It is injected directly into the cerebrospinal fluid through the lower back. This should be done every four months throughout your life.
SMA is a genetic disease in which muscles throughout the body gradually weaken. It belongs to the orphan diseases, which today have become possible to detect in the first hours of life thanks to expanded neonatal screening. This allows you to apply therapy that will stop the development of the disease and completely neutralize its manifestations. Spinraza is one drug that provides just such therapy.