Children have died from lack of access to treatments for rare diseases such as epileptic encelopathy. They need drugs distributed by foreign companies, which abandoned the country after the invasion of Ukraine. The war not only causes extermination and destruction on Ukrainian soil, but also suffocates the lives of the weakest and most fragile in Russia.
Moscow (AsiaNews) - Due to a lack of treatment for seizures and convulsions, two children with a rare genetic disease, epileptic encelopathy, died in Russia in November. The necessary medicine, Ganaxolon, is not registered in the country, and was supplied by a US company. The same has been the case for years for many other preparations for diseases that are difficult to detect and treat, which in Soviet times were simply ignored, and in the Russia of the last 30 years have been treated with foreign drugs.
The war in Ukraine has led to the exit of many pharmaceutical companies from Russia, not to mention charities and voluntary organisations, which are often blocked or expelled by the Russian authorities as 'foreign agents', invaders attempting to 'bribe' Russia with tablets and vaccines. The deaths of several children in recent weeks are, however, confronting government officials and health workers with an emergency that threatens to become increasingly dramatic.
The US company Marinus, one of the most active in Russia, has abruptly stopped clinical research on Ganaxolon, leaving the group of children who were included in the treatment abandoned. The two children who died amid great suffering in Kaliningrad and Surgut (a 7-year-old and a 6-year-old) were part of it, as an industry activist, St Petersburg lawyer Nikita Sorokin, informs Sever.Realii. In order to try to use the remaining reserves as long as possible, the children are reduced doses of the drug, leading them to slow agony.
Children with this form of encelopathy lose their breath in sudden bursts; the liquid that forms in the body then bursts out like a fountain. The body is shaken by strong epileptic tremors, to the point of shattering bones, all before the eyes of the helpless parents. Sorokin and others have been trying to get Ganaxolon registered in Russia for some time, organising protest actions together with the parents of the sick children in front of the governor's palaces of various regions, where the affected families live, 'so that they too can feel the tremors and crunches of those who are denied treatment'.
Throughout Russia there are 75 people affected by this specific disease, but the shortage of medicines affects many pathologies, some very rare and others more widespread such as cystic fibrosis or haemophilia, for which specific products, such as those for blood coagulation, are beginning to be lacking. In spite of bureaucratic and ideological difficulties, many patients, mostly children and young people, have been assisted for years by volunteers from various countries, especially the United States, Germany and Italy, with great commitment from associations for the fight against various diseases, national Caritas, the German Renovabis and many others.
As the mother of a child with epileptic encephalopathy recounts, 'the most terrible thing is that each shock wipes out several brain cells, and all the things learned in the last two to three months, or even a year, are erased from memory and consciousness. The bones in the arms and legs break, rendering these children disabled even in their movements, and osteoporosis develops, making the entire organism very fragile.
Therapeutic research, in addition to the provision of medicines, is the only real hope for those suffering from rare diseases, often condemned to a very premature death. In the case of haemophiliacs, it is often necessary to have a thorough knowledge of the area, where families isolate themselves, thinking they are protecting themselves, effectively multiplying the spread of the disease. However, attempts are made to reintegrate them into more socially suitable environments even before any therapy begins, and this work is not provided by basic Russian health facilities. Nor are voluntary associations to invite blood donation, which is necessary for haemophilia and many other diseases, widespread in Russia.
The war not only causes extermination and destruction in Ukraine, but also suffocates the lives of the weakest and most fragile in Russia, nullifying the efforts and impulses of generosity and charity towards the needy, sentiments that know no nationality limits.