On April 21, parents of children with achondroplasia, as well as people who have joined them in solidarity, organized another protest in front of the Government Administration in response to Georgian Health Minister Zurab Azarashvili’s reluctance to answer whether or not the drug “Vosoritide”, which is used to treat the achondroplasia, will be financed by the state. The parents have spent two nights in front of the administration, demanding a meeting with the Prime Minister of Georgia, Irakli Garibashvili to further discuss the issue.
Earlier, Zurab Azarashvili and his deputies held a second meeting with the protesting parents at the Ministry of Health. According to the Ministry, during the meeting the Minister reiterated his earlier statement that in many countries there is a discussion about financing of these drugs for the height growth in patients diagnosed with achondroplasia, and in some countries the reviews have been suspended due to increased risks of the drugs and insufficient evidence of their efficacy. Therefore, on the basis of the detailed information received by the Coordination Council for Rare Diseases and, accordingly, the Ministry of Health, from various countries and the World Health Organization, no decision has been taken regarding the importation of the drug.
During the meeting, the Minister promised the parents: “We give an unconditional guarantee that if, according to the data of September of this year, at least some EU countries will take responsibility and finance the newly developed drug for achondroplasia from the state budget, Georgia will be one of the leading countries in the world that will share this responsibility and implement the necessary procedures for the purchase of the drug.”
However, the parents of children with achondroplasia do not intend to wait till September. One of the parents, Keti Begiashvili, said in an interview with “Formula TV”: “I demand that the Ministry of Health provide us with this record [of the meeting] as soon as possible, so the whole of Georgia can see… [the minister] telling me personally: What do you think, I have this money lying around?”
She added that the Minister emphasized several times that in Georgia’s neighboring countries, such as Russia, Turkey and Kazakhstan, this medicine is financed from presidential funds, completely ignoring the fact that in Spain, the Czech Republic and other countries, this medicine is financed directly from the state budget. In addition, she emphasized that the Ministry completely ignores these children, only mentioning their growth stature as a problem, whereas the children have multiple health complications.
Commenting on the Health Minister’s promise to ensure the treatment of children with achondroplasia in the 2024 state budget, Keti Begiashvili said that earlier “the Chairman of the Health Committee said that children [with achondroplasia] will start treatment by 2023… what guarantee do I have that they will not deny it again and fight us with new arguments?”, adding that the parents will not stop protesting until Prime Minister Garibashvili meets with them.
For almost a year and a half, parents of children with achondroplasia have been demanding that appropriate medicines be imported into the country. They have been protesting at the Ministry of Health for the past four months, but to no avail. On April 3, parents came to the government building to demand a meeting with Prime Minister Irakli Garibashvili, but the meeting did not take place. No other official came to speak to them.
The exact number of children with achondroplasia in Georgia is unknown. According to unofficial data, there are around 30 children with the condition.
