Parents of children with Duchenne muscular dystrophy and their supporters spent the night outside the Government Administration building in Tbilisi, beginning a 24-hour protest demanding access to treatment.
As reported by the Publika from the scene, Police did not allow protesters to bring pouf into the square in front of the administration building. One supporter was also reportedly prevented from bringing a pillow. At the time, temperatures in Tbilisi were around 8°C.
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 been demanding that the state import drugs approved by the US Food and Drug Administration (FDA) and finance periodic studies.
The Ministry of Health says it refuses to import the drugs due to potential safety risks, noting that FDA approval was expedited and that long-term studies are still ongoing.
Parents, however, say the medications are already actively used in the United States and Europe and question why Georgian children would face different risks. They also argue that the ministry’s position is driven largely by financial considerations, as the cost of treatment runs into millions of dollars.
The parents have also been trying for more than two months to meet with Prime Minister Irakli Kobakhidze without success.
Related story:
Parents appeal to government, Patriarchate over Duchenne treatment access
