Parents of children diagnosed with Duchenne muscular dystrophy are meeting with Georgian Prime Minister Irakli Kobakhidze at the Government Administration building in Tbilisi.
Speaking to journalists ahead of the meeting, Kakhaber Tsikarishvili, the parent of a child living with Duchenne muscular dystrophy, said he hopes the talks will lead to concrete decisions regarding access to treatment.
“We have always been ready for this meeting. We hope the government is also prepared and has a specific proposal regarding the medication, including a timeline for when it will be brought into the country and when children will begin receiving it. We expect this to be a productive meeting,” Tsikarishvili said.
Commenting on previously announced working-format meetings involving medical specialists, Tsikarishvili noted that no concrete steps have yet been taken because the Georgian Patriarchate requested additional time to study the issue.
“We had brief communication with the Patriarchate, and they told us they need more time because they are still working on the Duchenne issue. They did not provide any further details and only asked for additional time,” he said.
The meeting follows discussions held on May 19 between parents of children with Duchenne muscular dystrophy and Shio Mujiri. Following those talks, it was announced that working meetings involving specialists would be organized.
Based on the plan, representatives of the Georgian Patriarchate, the Patriarchate’s University Clinic, medical experts and other interested stakeholders would participate in efforts aimed at addressing the treatment and care needs of children affected by the rare genetic disease.
Image: TV Pirveli
