The state charitable foundation “Circle of Kindness” has commenced the distribution of the drug Revcovi (elapegademase-lvlr), which is currently unregistered in Russia. According to reports, the first two patients at the Dmitry Rogachev National Medical Research Center of Pediatric Hematology, Oncology, and Immunology have already undergone the treatment.
These children, afflicted with severe combined immune deficiency due to adenosine deaminase deficiency (ADA-TCID), have made history as the first in Russia to receive the costly medication Revcovi.
“ADA-TCID is a very rare genetic disease that occurs with a frequency of 1 in 500 thousand newborns. The lack of the ADA enzyme leads to the fact that the child has virtually no immunity. Until recently, these children simply died,” the statement quotes the chairman of the board of the foundation, Archpriest Alexander Tkachenko.
According to him, this enzyme replacement therapy costs tens of millions of rubles. “The first patient with ADA-SCID began therapy at the age of six weeks. Laboratory immunological parameters improved significantly during the first weeks of treatment, and the infections with which the child was admitted were cured. The second patient has been receiving the drug for a month now, and doctors are observing improvements in laboratory and clinical parameters,” he added.
