Parents of children with achondroplasia give gov’t five days to set time for importing drug

Parents of children with achondroplasia, a rare disease affecting bone growth, on Monday gave the government five days to tell them a deadline for providing Voxzogo (vosoritide) drug in the country, claiming relevant agencies did not seem motivated to hasten imports. 

In their press comments at the government office, the parents said the delay could make the drug useless for several children with the disease, as it is effective only in the children up to 15 years. 

“In our country, doctors created a protocol for the diagnosis of achondroplasia from scratch, which is a very big step forward. In other countries, the drug was introduced without updating the protocol because it existed. A month ago, the draft was almost finished, it was almost ready, and a month was quite enough for them to officially approve it.

“However, deadlines are constantly being pushed back, and we also have a feeling that it is possible to drag this out so much that the treatment becomes useless for some children. Time is crucial for these children”, said the parents. 

The government promised to provide the drug after large protests in May. The parents said they will continue the protests if concrete dates would not be named. 

The drug was approved in 2021 by the European Medicines Agency and the United States Food and Drug Administration for the illness.