Parents of children with Duchenne muscular dystrophy have met with the Catholicos-Patriarch of Georgia, Shio III.
Zakro Gvishiani, the father of one of the children, stated that the Patriarch promised to get involved in resolving the issue and to discuss the matter with all decision-makers—including government officials, doctors, and other responsible parties.
Gvishiani emphasized that the conversation at the Patriarchate was “very good and substantive.” The parents provided a detailed explanation of the challenges families face, why the children urgently need the medications, and what information about the disease is often misreported.
He noted the importance of the Patriarchate having accurate information regarding both the disease itself and the medications.
“We hope that the Patriarchate will take effective steps and that the decisions we have been advocating for all this time will be made as quickly as possible. We maintain that this problem can be solved in a very short time—specifically, regarding the acquisition of the medicine,” Gvishiani added.
The Patriarchate also discussed the issue of providing assistance to families, including communication support and the creation of a foundation.
Zakro Gvishiani said that the Catholicos-Patriarch promised to join the efforts to resolve the issue and discuss the problem with those on whom the decisions depend.
Furthermore, according to the parents, the Patriarchate announced that children with Duchenne dystrophy would receive periodic blessings.
Georgian PM on Duchenne medication: 50–60 million GEL is the people’s money
It should be noted that the parents of children with Duchenne have repeatedly appealed to the Georgian Patriarchate with letters requesting mediation with the authorities. On May 19, they held a meeting with the new Patriarch, Shio III.
As a reminder, Georgia’s Minister of Health, Mikheil Sarjveladze, stated during an interpellation hearing (a formal parliamentary inquiry) regarding children with Duchenne disease that the ministry’s “door has never been closed” to parents and remains open. He emphasized that the department will continue its ongoing work on these issues and expressed hope that a fully effective, accessible, and safe drug would soon become available.
Sarjveladze stressed that those who believe he does not understand when social media circulates articles by “funded” doctors praising a particular drug, or when praise is heard from certain organizations, are mistaken.
What is the conflict?
Since April 20, parents of children with Duchenne muscular dystrophy in Georgia have been demanding that the state import medications to slow the progression of the disease and provide government funding for these drugs. Additionally, they are calling for the creation of a multidisciplinary medical team in the country to monitor and treat such patients.
According to open sources, several drugs have been approved in the US and the EU, though the situation remains complex and depends on the specific medication.
For instance, regarding the drug Elevidys—the world’s most expensive gene therapy ($3.2 million)—it has not received EU approval but was approved in the US. This is the medication parents most frequently demand.
However, the Georgian Ministry of Health cites the EU’s position, arguing that it cannot be used under state funding in Georgia, as the authorities consider such therapy to be “experimental.”
The parents insist that this is the only chance for their children, citing the drug’s approval in the US as their primary argument.
The disease is a severe genetic condition that progresses rapidly and leads to the loss of motor functions, which is why families are insisting on urgent decisions.
More on the issue—in the SOVA blog.
