Parents of children diagnosed with Duchenne muscular dystrophy (DMD), a rare and progressive genetic muscle-wasting disorder, launched round-the-clock protests outside the Government Administration building in Tbilisi, as officials dispute their claims about the necessity and effectiveness of what parents say is life-saving medication.
For over a year, parents have been calling on authorities to fund newer medications such as givinostat (Duvyzat) and vamorolone, which they say are approved and used in Western countries and can help slow disease progression. They say the drug deflazacort, currently funded by the Health Ministry, has limited effectiveness and causes significant side effects.
Around 100 children in Georgia are reported to live with DMD. Primarily affecting boys, symptoms usually appear between ages 2 and 5, leading to loss of mobility by age 10, and early mortality, typically between ages 25 and 30.
Parents have been holding protests for over a month, demanding, among others, a meeting with Georgian Dream Prime Minister Irakli Kobakhidze, and turned to non-stop rallies on April 20, staying overnight outside the Government Administration in downtown Tbilisi. Tensions flared on the first day as police prevented them from bringing pouf chairs and other equipment to the protest scene. Earlier, parents had also reported that police denied their request to set up tents on the site.
Despite restrictions, parents vow to continue their protest and have spent nights on nearby benches.
“We will go through all the steps that need to be taken until this result is achieved,” Ketevan Ekhvaia, one of the parents, told reporters. “We will not allow the state to let our child reach a fatal outcome […] We will stand here until we manage to import the medicine. We will not give up.”
GD Minister Disputes Medication Effectiveness
In a briefing held on April 21, GD Health Minister Mikheil Sarjveladze disputed parents’ claims, effectively denying their main request and calling the issue “increasingly politicized.”
“At present, there is no medication in the world that claims to cure Duchenne,” Sarjveladze said. “There are only drugs that aim to slow the progression of the disease, potentially delaying the age at which a wheelchair becomes necessary by one to three years.”
The minister also questioned the reliability and broader impact of the medications demanded by parents, noting that European countries approach their use with caution.
“The demand concerns medications whose function is not to save lives, not to cure the disease, and not even to prolong life […] but rather medications whose only purpose, and even this remains uncertain, is to delay the need for a wheelchair,” he said.
The minister, however, stated that a draft amendment had been submitted for discussion at a government meeting, which would expand access to outpatient, inpatient, and diagnostic services for patients with DMD and other rare diseases.
Parents rejected the minister’s arguments as “misleading” in a press briefing shortly afterward.
“Sarjveladze claimed that no medication is recognized, even though many are recognized by both the U.S. Food and Drug Administration (FDA) and the European Medicines Agency (EMA),” said Zakaria Gvishiani, one of the parents and the chairman of the organization Let’s Fight Against DMD. He cited givinostat and vamorolone as medications already in use internationally and, in some cases, by Georgian patients. “We have real-life examples,” he said.
Gvishiani called Sarjveladze’s claim that the medication may delay the need for wheelchair use by 1–3 years “absurd,” saying that “today, any citizen can see that any of the medications I listed can double life expectancy.”
Gvishiani also requested that authorities establish a multidisciplinary care team to more effectively address the issue.
The Opposition Alliance, a newly formed coalition of nine parties, backed the parents’ advocacy, calling for urgent action from the authorities.
Speaking at an April 21 press briefing, Gigi Tsereteli, leader of the European Georgia party and former health minister, said it was “morally indefensible” to question the effectiveness of modern treatments.
“It is devoid of moral grounds to claim that today’s modern medications are not effective,” Tsereteli said. “Everyone must understand that every day, month, and year is critically important for these families, for these people, for these children, and this issue must be resolved.”
Public Defender Backs Assembly Rights
Georgia’s Public Defender weighed in on April 21, criticizing restrictions imposed on demonstrators and emphasizing the importance of protecting the right to peaceful assembly.
“The Public Defender of Georgia emphasizes that freedom of assembly includes the right to choose the form of protest, which allows participants to use temporary structures and other items,” the statement reads. “At the same time, the state is obliged to facilitate peaceful assemblies and demonstrate tolerance towards the form of protest chosen by participants.”
The office called on the Ministry of Internal Affairs to ensure the rights of protesters are respected and urged authorities to engage in “active and substantive dialogue” with parents, citing the urgency and sensitivity of the situation.
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