Georgia ends 45-night protest as Duchenne families secure lifesaving drugs

Parents of children with Duchenne muscular dystrophy in Georgia have ended their 45-night protest after reaching an agreement with the government. The deal, brokered by Prime Minister Irakli Kobakhidze, secures access to four critical medicines that families have long demanded. Health officials and parents will now work together to finalise the procurement process.

The protests began months ago, with parents calling for access to Elevidys, exon skipping therapy, Givinostat, and Vamorolone. After 45 consecutive nights of demonstrations, government officials held two meetings with the families. These discussions led to a formal agreement on ensuring the medicines would be made available.

A working group will now oversee the purchase of the drugs. This team will include representatives from the Ministry of Health and parents of affected children. Health Minister Mikheil Sarjveladze confirmed that the process would continue in this collaborative format. The final decision on which medicines to procure will depend on several factors, including proposals from pharmaceutical companies. Parents and patients will receive updates first, with full public details to follow later. Meanwhile, the Ilia Student Movement, which supported the campaign, raised 2 million GEL to address other needs of children with Duchenne.

With the agreement in place, parents are now shifting from protest to what they call a 'work mode'. The working group’s next steps will determine how and when the medicines become available. The government has committed to keeping families informed throughout the process.