Edem Adamanov told how patients with SMA can get treatment for free

On the occasion of the International Day of Rare Diseases, Medical Procurement of Ukraine joined the public dialogue on providing assistance to orphaned patients during the war.

Edem Adamanov, the acting general manager of the MPU, spoke about the purchase of medicines for patients with orphan diseases through the mechanism of managed entry agreements (MEA). In particular, he focused on treatment for spinal muscular atrophy and explained how to get it for free.

"The MEA mechanism was applied In 2022 for the first time in Ukraine. With its help, we can provide patients with rare diseases with expensive and innovative medicines. A feature of this mechanism is the confidentiality of some procurement details, including quantities and prices. Thus, it is possible to achieve the best price and provide the necessary medications to as many patients as possible," - described Edem Adamanov.

According to him, the Medical Procurement of Ukraine purchased 11 items using managed entry agreements: "We are talking about medicine for the treatment and prevention of angioedema attacks, haemophilia medication, Pompe disease, Gaucher disease and spinal muscular atrophy. Later this year, children with SMA of the first type will be able to get the Risdiplam medicine for free",- emphasized Edem Adamanov.

He also told how exactly patients will be able to get Risdiplam: "If the child's diagnosis is confirmed by January 1, 2023, the first taking the medication takes place at the National specialized children's hospital “Ohmatdyt”. 

Further, the patient will take the medicine at his healthcare institution. If the child was diagnosed with SMA already this year, the hospital where the disease was diagnosed transfers the data to the Department of Health. Then, based on this information, NСSH "Ohmatdyt" makes a decision about the feasibility of treatment with Risdiplam. If the decision is positive, Medical Procurement of Ukraine will carry out an additional purchase", Edem Adamanov detailed.

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