Bishop Anton stated that as soon as the first meeting of the Holy Synod (the governing body of the Georgian Orthodox Church) takes place, all critical issues will be raised and systematically reviewed—including topics related to the treatment of children with Duchenne muscular dystrophy and the pardoning of prisoners detained during the dispersal of pro-European protests in 2024.
Archbishop Anton also added that his personal position on this matter, as well as the position of any sensible person, is positive.
“My position—and the one any sensible person should hold—is, of course, positive. <The Church will have a recommendation regarding the medication> it will definitely be there,” he noted.
Parents of children with Duchenne disease: “Save our children”
It should be noted that parents of children with Duchenne disease have appealed to the Patriarchate of Georgia several times with letters requesting assistance.
Earlier, the Minister of Health of Georgia, Mikhail Sarjveladze, stated during an interpellation hearing (a formal parliamentary inquiry) regarding children with Duchenne disease that the “door has never been closed” for parents at the ministry and remains open. He emphasized that the department will continue its ongoing work on these issues and expressed hope that a fully-fledged, truly accessible, and safe drug would soon appear.
Sarjveladze emphasized 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 an 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 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 approval in the European Union but was approved in the United States. Parents most frequently demand the use of this specific medicine.
However, the Georgian Ministry of Health cites the EU’s position, arguing that it cannot be used in Georgia under state funding; the authorities consider such therapy to be “experimental.”
Parents, on the other hand, insist that this is the only chance for their children and point to the drug’s approval in the US as an argument.
The condition is a severe genetic disorder that progresses rapidly and leads to the loss of motor functions, which is why families are insisting on urgent decisions.
More on the issue can be found in the SOVA blog.
