Students announce joining rally demanding achondroplasia drug for children

Students from different universities in Tbilisi on Friday said they would on Saturday join a rally of parents with children suffering from achondroplasia – a rare genetic disease slowing bone growth – demanding the government to supply and fund an expensive, revolutionary drug in treatment of the disease. 

The students said they would gather in central Tbilisi at 2 p.m. and march to the government office, demanding the imports of Voxzogo (vosoritide), that was in 2021 approved by the European Medicines Agency and the United States Food and Drug Administration. 

In its comments, the government claimed possible side effects, not funding behind its delay, saying the World Health Organisation had not authorized the specific drug so far. 

However, following the more than a month-long protests in the country’s capital, the authorities claimed they had tasked a domestic council working on issues of rare diseases to elaborate a protocol for treatment with the drug by the end of Summer, and added it  was also communicating  with the medicine manufacturer for its potential imports. 

The government has also pledged all available treatment for the children with achondroplasia until the possible introduction and funding of the drug, whose estimated number is 30 in the country, with no official statistics present. 

Despite the promises coming from the government, the parents are proceeding with their rallies and demanding the “urgent introduction” of the drug that is effective only under 18 years.