Georgian parents of children with Achondroplasia spent a sixth night at the government chancellery Monday-Tuesday.
They plan to stay there until the government imports and finances the necessary medicine [Vosoritide] for their children.
For several months now, parents have been actively protesting and demanding the necessary medicine for children with Achondroplasia. The state ha yet to satisfy their request.
Yesterday, April 24, Prime Minister Irakli Garibashvili announced that they will not finance the medicine for achondroplasia yet. He claimed that there is no problem of financing the medicine in the country, which costs about GEL 10 million, but the government needs more “medical evidence” before it takes such a step.
“Unfortunately, in recent days we have seen the unrest that has been created regarding the issue of children with achondroplasia, despite the fact that the Minister of Health, his deputy, very authoritative doctors, the representative of the World Health Organization – all made comprehensive comments. However, there are still questions and, unfortunately, irresponsible politicians who are known for their fakeness and hypocrisy, trying to use innocent, helpless children for personal interest and run a political campaign.
“I want to express my full sympathy to the children with Achondroplasia; I want to tell them that the state stands by them and of course we will do everything necessary, but I want to ask them not to allow politicians to use them for personal interests and not to participate in this political campaign willingly or unwillingly “, says Garibashvili.
The matter concerns the drug Voxzogo (active ingredient – Vosoritide), which was authorized by the US Food and Drug Administration (FDA) and the European Medicines Agency (EMA) in 2021.
This drug is the first to be used to treat the syndrome and its symptoms. Parents say that it is only effective when taken up until the age of 18.
Achondroplasia is a disorder of bone growth that prevents the changing of cartilage, particularly in the long bones of the arms and legs, to bone. It is characterized by dwarfism, limited range of motion at the elbows, large head size (macrocephaly), small fingers, and normal intelligence. Achondroplasia can cause health complications such as interruption of breathing, obesity, recurrent ear infections, and an exaggerated inward curve of the lumbar spine. More serious problems include a narrowing of the spinal canal that can compress the upper part of the spinal cord and a buildup of fluid in the brain. Some people with Achondroplasia may have delayed motor development early on, but cognition is normal. Achondroplasia is caused by genetic changes in the FGFR3 gene.
By Ana Dumbadze
Image source: Netgazeti