The diagnosis of Achondroplasia was added to the list of treatable rare diseases within the framework of the state program. The corresponding change was made in the government decree “On the approval of state health protection programs for 2023”.
As stated by the parents of children diagnosed with Achondroplasia, who requested the funding of medicine for children with this diagnosis through regular demands made to the government administration, with the change, the government officially takes responsibility for the treatment of people with Achondroplasia:
“Until now, there was a state program for the treatment of rare diseases, in which achondroplasia was not included. It has now been officially introduced by order of the Prime Minister, which means that the state officially takes responsibility for our treatment,” says Makuna Gochiashvili, one of the participants of the Mothers’ protest rallies.
“This already means that even if the protocol is ready at the end of May and is approved in the middle of June, according to that protocol, the state is already expected to take responsibility within the framework of their obligations.”
Parents of children with Achondroplasia announced on May 5 that they would end their 24/7 protest at the Government Chancellery, the main demand of which was to bring expensive medicine into the country with state funding.
According to the parents, they reached an agreement with the authorities and received a verbal promise that in a few weeks, the authorities would take concrete steps to introduce the only medicine for the treatment of achondroplasia, “Vosoritide”.
“We will continue to fight to get that medicine for our children as soon as possible,” the parents said.
Related Story: Deputy health minister: We’re ready to quickly create a protocol & guideline for the management of Achondroplasia
