PM to Parents of Children with Achondroplasia: Do not Let Politicians Use You

Georgian Prime Minister Irakli Garibashvili said at a government meeting on April 24, commenting on the protests by parents of children with achondroplasia, that they “should not let themselves be used by politicians and they should not knowingly or unknowingly take part in this political campaign.”

Despite the parents’ requests to meet with the Prime Minister, he has not yet done so.

PM Garibashvili expressed “solidarity” and “sympathy” with the children suffering from achondroplasia, telling them that “the government, the state is with you” and will “do what is necessary.” He also stressed that the government has not refused to finance the necessary medicines and “this is not about money”, but “this process should be managed correctly so that these people do not have to endure great hardship as a result of receiving these medicines.”  

The Prime Minister also noted that although the drug Vozoritide was invented in the United States, “they have not yet funded this program” and “they are still waiting for the completion of the fourth phase, studies, side effects [and] negative consequences.” He also noted that Great Britain has also suspended funding for the program, and “there is a discussion about it in Europe.”

“As a member of the World Health Organization (WHO), we rely on their guidelines, their instructions. A few days ago, a representative of the World Health Organization, who is in Georgia, came out and explained in detail that the WHO does not recognize this medicine and does not recommend funding this program,” PM Garibashvili said.

Therefore, the Prime Minister believes that “we need time, I want to address the parents of these children, the Ministry is ready to go through this process, this path together. Let’s wait for the conclusions of the World Health Organization, their instructions, and only then will this program be launched,”- he said, reiterating that no government program in the world finances treatment with this medicine and “we are told that Georgia should be an exception and irresponsibly, populistically get involved in this program, which is inadmissible.”  

“I also have some acquaintances, whose children have been diagnosed with this disease and their lives are not in danger. I know many famous people around the world who are successful, and they cannot be discriminated against at all. We must commit ourselves to this,” the PM said, adding that “everything will be fine, we will wait a few months… once this issue is resolved, several countries will start treatment with this guideline, and we will also join the program.”

Commenting on the recent protests, PM Garibashvili accused “irresponsible politicians” known for their “falsehood and hypocrisy” of conducting a “political campaign” using “helpless children.”   

He called on these politicians “to stop their immoral actions and not to use these people, the parents of these people for their narrow partisan interests.” “We will not leave any citizen without attention, and we will do our best. But it takes time and less emotion” – PM Garibashvili added.

Parents respond  

The parents of children with achondroplasia, who had already spent five nights in front of the Government Administration, were dissatisfied with the Prime Minister’s remarks. Their demands remain unchanged, and they are still waiting for a meeting with Irakli Garibashvili.

“Let him tell us, the parents how long we have to wait… tell us how much time is needed for parents to stand like this and go to their children and tell them that we cannot treat them,” – one of the parents told the journalists, calling on the Prime Minister and Health Minister Zurab Azarashvili to spend a day with their children and “they will understand what we are demanding and why.”

“Today, we parents are very strict, waiting for the final decision, frozen and humiliated. I was not so embittered even when I learned of my child’s diagnosis,”- another parent noted.

“I have been a member of Georgian Dream since 2015. I have asked your party and my majoritarian MP for help. Do you think that we, the parents, are political?! We will not allow any party to do this. They are just expressing their sympathy to us,”- she said in response to the Prime Minister’s call not to engage in political campaigning.  

The Social Justice Center, a local NGO, has called on the government to take “all measures” to purchase medicines for children with achondroplasia. The organization also called on the government to initiate an intensive dialogue with parents in order to better identify the needs and challenges of the children; to develop and present to society and parents in the shortest possible time a precise vision (including the allocation of budgetary resources) regarding the import of medicines into the country and access to them; to ensure access to medicines in the shortest possible time, at least for children with the most acute needs.

“Fund medicine for children” – this is the demand of another protest rally planned for April 24 at 7 pm in front of the Government Administration.

Also Read:

• 21/04/2023– Parents of Children with Achondroplasia Demand Meeting with Prime Minister
• 04/04/2023 – Despite Protests, Health Ministry Has No Plans to Import Drugs for Achondroplasia

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