Georgia Parents Demand Access to Medications for Children with Duchenne Muscular Dystrophy
Tbilisi, Georgia – Parents of children with Duchenne muscular dystrophy (DMD) in Georgia are intensifying their campaign for access to life-extending medications, arguing they are running out of time. The rare genetic disorder, characterized by progressive muscle degeneration, typically results in a life expectancy of around 20 years. For a year, families have been petitioning the Georgian authorities to approve the import of expensive treatments currently available in the United States and several European countries.
These medications, vital for extending patients’ lives to 30-40 years, are unaffordable for most families, even with extensive fundraising efforts. Since initiating protests three months ago, the parents have held nine meetings with the health minister without success. A police cordon has been established outside the government administration building, limiting access for the children and their families.
To date, three teenagers with DMD have tragically died, including 17-year-old Avtandil, who passed away in March. The campaign highlights the urgent need for state intervention. Parents are demanding budget allocation for DMD treatments, echoing previous successful campaigns for children with achondroplasia.
Nikoloz Tsikarishvili, 13, and his grandmother, Tsisana Tepnadze, exemplify the family’s struggle. The boy’s diagnosis, similar to that of his uncle Luka, underscores the rarity of the condition and the challenges in early detection. “We have very little time,” stated one parent, reflecting the desperation of the situation.
The protests, including a pro-European march, are focused on securing access to essential medications for children affected by this devastating disease. The situation underscores the critical need for increased awareness and resources for individuals living with duchenne, muscular dystrophy in Georgia.
Topics: #duchenne #muscular #dystrophy
