Parents of children with the rare genetic disease Duchenne muscular dystrophy (DMD) are appealing to the government, the Patriarchate, and the Public Defender, asking for public support in their fight for treatment and life-saving medicine.
The parents’ protest aims to meet Irakli Kobakhidze, Prime Minister of Georgia. They have been holding demonstrations at the government administration for over three months and have submitted several requests for a meeting with the Prime Minister.
In February, they were met by Levan Zhorzholiani, head of Kobakhidze’s administration, who promised to facilitate communication with Kobakhidze and the Minister of Health. A subsequent meeting with Mikheil Sarjveladze also took place, but parents say discussions with the Ministry of Health have been ineffective.
Duchenne muscular dystrophy causes early muscle wasting, often leading to wheelchair dependence and fatal outcomes. The initiative group says around 100 children with DMD are registered in Georgia.
For more than a year, parents have demanded that the state import drugs approved by the US Food and Drug Administration (FDA) and fund periodic studies.
The Ministry of Health says it refuses to import the drugs due to potential safety risks, emphasizing that FDA approval was expedited and long-term studies are still ongoing.
Parents counter that these medications are actively used in the US and Europe and question why Georgian children would face different risks. They also suggest the ministry’s opposition is largely financial, as the cost of the drugs runs into millions of dollars.
