Achondroplasia Added to State Rare Disease Treatment Program

Following protests by parents and activists, the government decided to include achondroplasia in the list of rare diseases covered by the state program. A corresponding amendment has already been made to the government decree.

Makuna Gochiashvili, a parent of one of the children diagnosed with achondroplasia who participated in protest rallies in front of the government administration demanding that the government import and finance the drug ‘Vosoritide’ for children with achondroplasia, wrote on Facebook that the government is taking responsibility for providing protocol treatment for people with achondroplasia.

“This includes any necessary procedures or therapies other than drugs. Until now, achondroplasia has not been included in this list, unlike other rare diseases,” she noted, adding that “the drug will be available when the protocol is finalized at the end of May and then it will be officially approved in a few days.”

According to her, considering “what is said in internal conversations, we have no reason to suspect that Vosoritide will not be included in the protocol. Nevertheless, we will wait for the protocol.”

At the end of April and beginning of May, parents of children with achondroplasia protested for 19 days in front of the government administration, demanding that appropriate drugs be imported into the country. The parents decided to end the protests after being promised that they would be allowed to attend weekly meetings at the Ministry of Health and be involved in the work to secure the drug.

Initially, government officials said that they had no plans to import the drug, citing its experimental nature and side effects. The Prime Minister even urged parents not to allow politicians to use them. However, after continued protests, the sides reached an agreement and the parents were promised that guidelines and protocols for the treatment of achondroplasia would be developed in an accelerated manner.

Also Read:

• 06/05/2023– Parents of Children Diagnosed with Achondroplasia End Round-the-Clock Protests
• 24/04/2023 – PM to Parents of Children with Achondroplasia: Do not Let Politicians Use You
• 21/04/2023 – Parents of Children with Achondroplasia Demand Meeting with Prime Minister

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