Georgian parents with children suffering from Achondroplasia stayed at the Government Chancellery for a sixth consecutive night between Monday and Tuesday.
They plan to remain there until the government imports the necessary medicine (Vosoritide) for their children.
Parents have been protesting and demanding medicine for their children with Achondroplasia for several months. The state has yet to fulfill their request.
Irakli Garibashvili, Prime Minister of Georgia, announced yesterday that the government will not fund the medicine for achondroplasia. He said that the government does not have a problem financing the medicine, which costs GEL 10,000,000, but it needs more “medical proof” before taking such a step.
“Unfortunately, we have seen in recent days the unrest created regarding the issue of achondroplasia children, despite the fact the Minister of Health, His deputy, very authoritative physicians, and the representative of the World Health Organization, all made comprehensive remarks. There are still many questions, and unfortunately, irresponsible, hypocritical politicians who use helpless, innocent children to run a political campaign.
Garibashvili says, “I want express my full sympathies to the children with Achondroplasia. I want them to know that the state stands behind them and we will do all that is necessary. But I want them to refrain from allowing politicians to use them to further their own personal interests, and to refrain from participating in this campaign, whether they are willing or not.”
The issue concerns the drug Voxzogo, which contains the active ingredient Vosoritide and was approved by the European Medicines Agency and the US Food and Drug Administration in 2021.
This is the first drug to be used in treating the syndrome and its associated symptoms. Parents claim that the drug is only effective if taken up to age 18.
Achondroplasia, a disorder in bone growth, prevents cartilage from converting to bone, especially in the long bones of arms and legs. It is characterized as dwarfism and a lack of range of motion in the elbows. Achondroplasia may cause complications, such as breathing problems, obesity, recurrent infections of the ears, and an exaggerated curve inward of the lumbar spinal column. A narrowing of spinal canal can compress the upper portion of the spine and cause fluid to build up in the brain. Achondroplasia can cause delayed motor development in some people, but cognition remains normal. Achondroplasia results from genetic changes in the FGFR3 genes.
By Ana Dumbadze
Image source: Netgazeti
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