A boy suffering from spinal muscular atrophy will not receive expensive medication because of the political ambitions of officials.
Mark Ugrekhelidze was diagnosed with a cruel diagnosis – spinal muscular atrophy.
Spinal muscular atrophy is a genetic disease in which protein production is impaired. Gradually, the patient stops moving, then his breathing stops and the patient dies.
For the treatment of SMA, several types of drugs are used that the patient must take for life and without much hope for a full recovery.
However, in Switzerland, the drug ‘Zolgensma’ has been developed, one injection of which is able to completely restore motor functions.
‘Zolgensma’ is one of the most expensive drugs in the world, the cost of one injection is from 2.1 to 2.5 million US dollars.
The Roizman Foundation raised the necessary amount to purchase this drug, but officials decided that Mark Ugrekhelidze would not receive a vital medicine.
The ‘Circle of Kindness’ Foundation , whose jurisdiction includes the functions of purchasing expensive drugs, commented on the situation with Mark Ugrekhelidze:
Zolgensma is a drug that has certain contraindications and serious side effects, including death. The Circle of Kindness Foundation does not have the opportunity to maintain a register of charitable fees, to track the status of expenditures collected by private benefactors. […]
The position of the Circle of Good Foundation remains unchanged. Decide which drugs will help the child, doctors should
The Circle of Good Foundation is under the personal patronage of President Putin.
Insiders reported that there is an order from officials of the Circle of Kindness Foundation prohibiting federal medical institutions from confirming the appointment of expensive drugs if the money for them is collected through crowdfunding.
As a result, a council of doctors, under pressure from officials from the Circle of Kindness Foundation, decided to refuse treatment with Zolgensma, motivating the refusal by the fact that the child is underweight.
In addition to Mark, another 1 child will not receive medicines, the money for which is collected in a similar way.
UPD: The Roizman Foundation still managed to push officials and the child will soon be given an injection of an expensive drug.
UPD: On April 6, Yevgeny Roizman reported that Mark Ugrekhelidze was given a Zolgensma injection. The child will live!