Families of Children with Duchenne Muscular Dystrophy Demand Access to New Treatments, Meeting with Kobakhidze

2026-03-30 - 11:51

Parents of children diagnosed with Duchenne muscular dystrophy (DMD), a rare genetic muscle-wasting condition, continue to demand that the state ensure free access to internationally approved, modern treatments and establish a multidisciplinary care team. The group has rallied multiple times, most recently outside the Government Administration in Tbilisi on March 28, where they requested a meeting with Georgian Dream Prime Minister Irakli Kobakhidze and called for Health Minister Mikheil Sarjveladze to resign. “We are demanding that within five days – not as an ultimatum, of course – we meet with the Prime Minister to tell the truth, with the Health Minister present. He [the minister] will have nothing to say,” said Zakro Gvishiani, one of the parents of children diagnosed with the rare syndrome and chair of the “Let’s Fight Against DMD” organization. “Otherwise, we will hold continuous street protests and may even set up tents,” he added. Around 100 children in Georgia live with Duchenne muscular dystrophy, a progressive neuromuscular condition that primarily affects boys, with symptoms appearing between ages 2 and 5. The disease often leads to loss of mobility by age 10, heart and breathing problems, scoliosis, and early mortality, typically between ages 25 and 30. For over a year, parents have demanded that Georgia fund newer medications such as givinostat (Duvyzat) and vamorolone, approved by the U.S. Food and Drug Administration (FDA) and the European Medicines Agency (EMA), which can slow disease progression. They say the drug deflazacort, currently funded by the Health Ministry, has limited effectiveness and causes significant side effects. In February 2025, the Ministry of Health granted immediate disability status to children diagnosed with DMD, entitling them to a monthly allowance of GEL 425, but parents say the support remains insufficient. The urgency of “life-saving treatment” has grown following the death of 17-year-old Avtandil Bregadze in early March, prompting calls for “timely and adequate” state measures. The Social Justice Center, a local human rights watchdog, said the state has a legal obligation to safeguard the right to life, “which includes guaranteeing equal access for all to adequate, available, acceptable, high-quality, and financially accessible healthcare services, as well as ensuring public participation in decision-making related to healthcare.” Despite repeated meetings over the year with Georgian Dream Health Minister Mikheil Sarjveladze and ministry representatives, parents say no tangible action has followed. In November 2025, Sarjveladze noted that these treatments had “only recently emerged worldwide,” citing “conflicting information” about their effectiveness and the financial interests of pharmaceutical companies, and added that their inclusion in state programs was currently unfeasible. Parents counter that FDA- and EMA-approved medications can slow disease progression, but their high cost makes state support essential. Since February, families have been holding protests and seeking a meeting with Irakli Kobakhidze. On February 13, they met with Levan Zhorzholiani, the head of the Government Administration, who promised the issue would be reviewed, but no concrete steps have yet been taken. Also Read: 25/08/2025 – Teen With Disability in Critical Condition After Rejections from Hospitals, Delayed Care 15/11/2023 – Parents Rejoice as Long-expected Achondroplasia Medication Reaches Georgia