THIS MESSAGE (MATERIAL) IS CREATED AND (OR) DISTRIBUTED BY A FOREIGN MASS MEDIA PERFORMING THE FUNCTIONS OF A FOREIGN AGENT AND (OR) A RUSSIAN LEGAL ENTITY PERFORMING THE FUNCTIONS OF A FOREIGN AGENT.
The Russians collected 121 million rubles for three-year-old Mark Ugrekhelidze with spinal muscular atrophy (SMA). on the drug “Zolgensma”. The fund of the Yekaterinburg politician Yevgeny Roizman, who took the child into care, closed the collection in five months.
However, raising money for medicine is not enough: in Russia, it can only be purchased through Putin’s Krug Dobra fund after the approval of a medical council. According to the Network of City Portals, on Thursday a council meeting was held in Krasnodar regarding the fate of the child. Neither the boy’s father nor the independent doctor Alexander Kurmyshkin, for whom the parents had issued a power of attorney, were allowed in.
Mark was denied treatment with Zolgensma. The chairman of the council, Svetlana Artemyeva, curator of the register of patients with spinal muscular atrophy in Russia, told the father of the child that this was “not advisable”.
Yevgeny Roizman called the actions of the Ministry of Health vile. He believes that high-ranking officials are interested in the treatment of SMA with Spinraza and Risdiplam. The politician recalled that Spinraz drugs should be made all his life, and this is a lot of money, while Zolgensma needs to be delivered only once.
Roizman added that if a child with SMA has to be sent abroad to get an injection, “everyone will talk about it.” Roizman pointed out that tens of thousands of people were behind the fundraiser for Mark. “Of course, people are all outraged. The whole country collected,” the public figure emphasized.
The regional Ministry of Health noted that the decision on the advisability of prescribing Zolgensma to a child with SMA was made by a federal commission, which included experts from the Pirogov Russian National Research Medical University, the Russian Children’s Clinical Hospital, and the National Medical Research Center for Children’s Health.
“The Ministry of Health of the Krasnodar Territory took part in the commission as an informing party and made a report on one issue – what kind of treatment the child is currently receiving. The final decision was made by the doctors of the listed federal clinics.
Source: Rosbalt
Tristin is an accomplished author and journalist, known for his in-depth and engaging writing on sports. He currently works as a writer at 247 News Agency, where he has established himself as a respected voice in the sports industry.
