Parents of children with Duchenne muscular dystrophy (DMD) have summarized the latest developments in their fight to secure state funding for life-saving medications, expressing gratitude to the head of the Georgian Orthodox Church, Shio III, for meeting with them and listening to their concerns.
In a statement, the parents thanked the Catholicos-Patriarch for his promise to mediate with the government on the issue of financing modern treatments for Duchenne muscular dystrophy, which they say are essential to saving their children’s lives.
The parents also welcomed the recent initiative to establish a state-backed multidisciplinary team and fund regular examinations for Duchenne patients, which was announced amid ongoing protests. However, they expressed regret that such measures had not been introduced two years earlier, arguing that earlier intervention could have prevented serious harm, including the deaths of several children. They stressed that services must also be fully extended to adult patients, whose condition often worsens after reaching adulthood.
At the same time, the parents criticized the government for what they described as the continued negative portrayal of modern Duchenne medications and pharmaceutical providers. They argued that four key treatments — Elevidys, exon-skipping therapies, Givinostat, and Vamorolone — have already been approved by US and European drug regulators and are increasingly being used internationally. Based on the statement, medication costs could be reduced through state negotiations with suppliers or outcome-based financing mechanisms.
Describing Duchenne muscular dystrophy as a progressive disease that irreversibly harms children every day, the parents said there is no time to wait and called for urgent negotiations with pharmaceutical companies.
The group pledged to continue peaceful protests until the medications become available in Georgia. They announced weekly one-person demonstrations every Wednesday and Friday outside the residence of honorary chair of the ruling Georgian Dream party, Bidzina Ivanishvili, in Sololaki, citing Interior Ministry restrictions on public gatherings at the site. They also said weekly “Duchenne Marches” would continue from Rustaveli metro station to the Government Administration building, while additional demonstrations will be held every Monday outside the State Chancellery.
In parallel, the parents have launched a public petition demanding state funding for Duchenne medications and calling for a sustainable national support program for rare diseases. The petition argues that while responsible budget management is important, protecting human life, health, and dignity must remain the state’s highest obligation.
“Life is not an unnecessary expense. Saving lives is the state’s main responsibility,” the petition states.
