Parents of children with Duchenne disease will meet with the Catholicos-Patriarch of All Georgia, Shio III.
Tako Gogoladze, the mother of one of the children, said that a call was received from the Patriarchate, and the families were informed that Catholicos-Patriarch Shio III is ready to receive the parents. The meeting is scheduled for 3:00 PM.
Three parents will attend the meeting: Kakha Tsikarishvili, Zakaria Gvishiani, and the wife of Kakha Tsikarishvili.
“For now, we only have information that the meeting will take place. We very much hope that concrete decisions will follow and that this matter will be settled once and for all. And that the lives and health of children in our country will truly be prioritized,” Gogoladze stated.
Parents of children with Duchenne disease: “Save our children”
It should be noted that parents of children with Duchenne disease have repeatedly appealed to the Georgian Patriarchate with letters requesting mediation with the authorities.
As a reminder, Georgian Health Minister Mikheil Sarjveladze, during an interpellation hearing (a formal parliamentary procedure for questioning government members) regarding children with Duchenne disease, stated that the ministry’s “door has never been closed” to parents and remains open. He emphasized that the agency would continue its continuous work on these issues and expressed hope that a full-fledged drug that is truly accessible and safe would soon appear.
Sarjveladze stressed that those who think he does not understand when an article by a funded doctor praising a particular drug circulates on social media, or when praise is heard from any organization, 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 state funding for these drugs. Additionally, they are calling for the creation of a multidisciplinary team of doctors in the country to monitor and treat such patients.
According to open sources, a number of drugs have been approved in the US and the EU, but the situation remains ambiguous 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 European Union approval but was approved in the US. Parents most frequently demand the use of this particular medication.
However, the Georgian Ministry of Health cites the EU’s position and argues that it cannot be used in Georgia under state funding; the authorities consider such therapy to be “experimental.”
The parents insist that this is the only chance for their children and point to 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 the families are insisting on the urgency of these decisions.
More on the issue — in the SOVA blog.
Protests in Georgia: parents of children with Duchenne demand access to medications
