Parents of children diagnosed with achondroplasia demand that the government issue a decree stating that the drug Vosoritide will be imported no later than the 1st of September.
At the rally held on April 29, the parents announced the deadline for bringing the drug to Georgia. They claim that the medicine should be provided to all children diagnozed with achondroplasia in Georgia, regardless of their age.
As the parents say, they distrust the Minister of Health Zurab Azarashvili and his deputy Tamar Gabunia and therefore demand a meeting with the Prime Minister Irakli Garibashvili.
They claim that their protest will continue until the Prime Minister signs the relevant decree.
Another rally outside the government administration demanding funding for the drug for children diagnosed with achondroplasia is planned on Monday, May 1st, during the government session.
The parents have been holding protests for several months, demanding the import of necessary medicine for their children in Georgia and funding from the state.
In response to the request of the parents, Irakli Garibashvili stated at the government meeting on April 24 that there is no problem of financing medicine in the country, as it costs about 10 million. However, the government is yet to take this step as it needs additional medical evidence to introduce the drug.
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.
Related Story: Parents of children with Achondroplasia demand appropriate medicines be imported & funded