The situation surrounding children with Duchenne muscular dystrophy remains critical in Georgia. Parents continue to demand state-funded access to life-prolonging medication, but despite more than a year of meetings with the Ministry of Health, no concrete decision has been made.
Public health expert Keti Chkhatarashvili said on BMGTV’s Analytics that the root of the problem is systemic: Georgia’s healthcare system responds to crises only after they escalate, rather than working proactively.
“The system operates in reactive mode. Over 30 years we’ve seen so many radical shifts, yet even today we often don’t know what decision will be made tomorrow.”
As an example, she pointed to Turkey, where healthcare development has followed the same strategic principles for decades, ensuring stability. In Georgia, the lack of a long-term vision keeps the sector in a constant “crisis mode.”
Chkhatarashvili also highlighted that Georgia has still not approved an essential medicines list, despite the document being drafted multiple times:
“This list has been prepared at least six times, but it has never been formally adopted in a way that major nationwide decisions could be based on it.”
Because Duchenne is a rare disease, she said, it is difficult to tailor the entire state budget around these needs. However, she emphasized that this does not absolve the government from taking systemic action to ensure access to treatment.
During an April 21 press conference, Health Minister Mikheil Sarjveladze stated that the main obstacles to importing the medications are safety risks associated with them. According to the minister:
- Some of the requested therapies are not authorized by the European Medicines Agency (EMA)
others are approved only by the U.S. FDA, not EMA - Annual financing for roughly 100 patients would cost the state around 100 million GEL
The minister said this represents a significant financial burden for the national budget.
