Health Minister calls parents requesting achondroplasia drug to become “fully involved” in Gov’t treatment plan

Georgian Health Minister Zurab Azarashvili on Monday called parents demanding the Government to approve and provide an experimental drug for treating achondroplasia in their children to abandon protests and “fully engage” in authorities’ plans to introduce, fund and offer guidelines for treatment with the medication. 

The official’s comment comes amid almost two-month-long protests by parents requesting the Government import and distribute Voxzogo (vosoritide) - a drug approved in 2021 by the European Medicines Agency and the United States Food and Drug Administration for the illness.   

Azarashvili said his office had offered the parents to become involved in “all working groups” related to the medication, both as part of the Council for Rare Diseases and a group tasked with offering a treatment guideline with the drug by the end of summer.

The Minister said the parents - who have been scheduled to meet with him later on Tuesday - were expected to engage in the Government's efforts for the drug considering their previous readiness for cooperation, and stressed “funding the medication [by the Government] has never been a problem”. 

Parents requesting achondroplasia drug for their children are expected to meet with the Health Minister at 3 p.m. on Tuesday. Photo: RFE/RL. 

Pointing to authorities' caution on potential side effects of the new drug, Azarashvili claimed his body had “spared no efforts” and had been involved in talks with “several parties” to ensure “all available treatment” for the rare condition slowing bone growth. 

• Possible side effects, not funding, issue with innovative achondroplasia drug for children - PM

There will be no delay, no problems from the Government side. However, it is hard to proceed with the process on the backdrop of protests, noise and tensions. We believe a constructive engagement will facilitate the introduction of treatment [with the drug]”, the Minister said. 

Silviu Domente, a representative of the World Health Organisation in Georgia, last Wednesday noted the introduction of the medication in many countries would be a “long process”, and said the domestic authorities were holding talks with the drug producer on its potential purchase. 

Based on various sources, achondroplasia occurs in one in 20,000-30,000 children worldwide. While no exact statistics have been released for Georgia, the parents have estimated the number of children with the illness to be between 20-30 in the country.

They also put the cost of an annual dose for each patient at ₾200,000 ($79,000), however the Health Minister cited the number of $200,000.

Along with slowing bone growth, the disease can cause a number of health issues like curvature of the spine, shortness of breath, ear infections, narrowing of spinal canal or hydrocephalus in rare occasions.