Parents Rejoice as Long-expected Achondroplasia Medication Reaches Georgia
After a long process of protests and negotiations by the parents of the children with achondroplasia, three teenagers and one child with severe symptoms finally received the first dose of the long-expected medication “Vosoritide” on November 15. One of the parents reported in her social media post that the drug finally arrived in Georgia two days ago.
Achondroplasia is a rare genetic condition that may lead to dwarfism. At the end of April and beginning of May, parents of children with achondroplasia protested for 19 days in front of the government administration, demanding that appropriate drugs be imported into the country. The parents decided to end the protests after being promised that they would be allowed to attend weekly meetings at the Ministry of Health and be involved in the work to secure the drug.
On May 24, the government decided to include achondroplasia in the list of rare diseases covered by the state welfare program. On July 26, the Coordinating Council for Rare Diseases approved the national protocol on Achondroplasia.
Ivane Chkhaidze, Medical Director of the M. Iashvili Children’s Central Hospital, said special preparations had to be made to prepare the hospital and the doctors for administering the drug safely since the side effects may be severe. As he noted, there is no information on how long the process may take, and it depends on the effects of the medicine. “First of all, we are talking about a one-year course because the manufacturer states that if the growth in height is less than 1.59 centimeters during a year, then there is no point in continuing to use this drug,” – he noted.
Also Read:
- 24/04/2023 – PM to Parents of Children with Achondroplasia: Do not Let Politicians Use You
- 21/04/2023 – Parents of Children with Achondroplasia Demand Meeting with Prime Minister
This post is also available in: ქართული (Georgian) Русский (Russian)
