A parent of a child diagnosed with achondroplasia: The time spent in so much bureaucracy is very alarming, the promise and its fulfillment do not match - we will hold a briefing on Monday, where we will announce the future plan

Parents of children diagnosed with achondroplasia talk about non-constructiveness on the part of the government and say that they are losing trust in the work process. According to the parents, a briefing will be held on Monday and a specific deadline will be named for the state to import the medicine "Vosoritide".

As the mother of one of the children diagnosed with achondroplasia, Makuna Gochiashvili told PalitraNews TV, the protocol for the introduction of medicine should have been approved from June 15 to 20, but it has not been approved yet.

According to her, the parents were patiently involved in the work process during this time, but the state is losing the parents' trust due to violations.

"At the last council, the government representatives promised us that between June 15 and 20, a protocol on the import of medicine would be established, a new council would be scheduled, and also, by this time, we would learn more about the negotiations with the drug company. We were not even informed that the council was not scheduled or that its appointment would be delayed. No one warned us, we had no communication with anyone. The protocol to be approved on June 15 is not approved even at the end of July.

We, the parents, were very constructively and patiently involved in the work process throughout this period. The time spent in so much bureaucracy and reading and writing is already very alarming for us. Communication is very unhealthy because the promise and its fulfillment do not match.

We, the parents, will hold a briefing on Monday, where we will announce our future plan and name a specific deadline for the state. They will have to tell us specific dates when they will introduce the medicine, because patience and constructiveness have their limits. The conditions must be mutual. So many things were violated on their part that the work process is losing our trust," said Makuna Gochiashvili.

We remind you that the diagnosis of achondroplasia was officially added to the state program of rare diseases on May 24. Prime Minister of Georgia Irakli Gharibashvili signed the document. According to this document, the state assumes the responsibility to provide people with achondroplasia with treatment stipulated by the protocol. This includes any necessary procedures or therapies other than medication.

For information, before the introduction of the above-mentioned document, parents of children with achondroplasia held protests for several dozen days and demanded funding from the state for the medicine "Vosoritide".