Georgia ends Duchenne protests with landmark medicine access deal

Georgia’s government has reached an agreement with parents of children suffering from Duchenne muscular dystrophy. The deal follows 45 nights of protests and months of public pressure. Parents will now shift from demonstrations to working with officials on securing vital medicines. The breakthrough came after two meetings between government representatives and families. Prime Minister Irakli Kobakhidze led the negotiations, which resulted in a formal commitment to address the parents’ demands. Their key request was access to four specific treatments: Elevidys, exon skipping therapy, Givinostat, and Vamorolone.

A working group will now be formed to oversee the procurement process. This team will include officials from the Ministry of Health and parent representatives. Health Minister Mikheil Sarjveladze confirmed that decisions will be made transparently, with parents and patients receiving updates first before wider public announcements. The final choice of medicines will depend on proposals from pharmaceutical companies and other relevant factors. Meanwhile, the Ilia Student Movement has raised 2 million GEL during the campaign to support additional needs of children with Duchenne. With the agreement in place, parents have announced the end of their protests and a transition to what they call a 'work mode'.

The deal marks a turning point after weeks of demonstrations outside government buildings. Parents will now collaborate directly with officials to ensure their children receive the necessary treatments. The working group’s next steps will determine how and when the medicines become available.