Parents of children with Duchenne muscular dystrophy say they have appealed to the Prosecutor’s Office, accusing police of restricting their protest outside the government administration.
The parents say officers have prevented them from bringing tents, blankets and pillows into the park, where they have been holding a 24-hour protest for seven days after earlier demonstrations failed to secure access to medication.
“Our protests are completely peaceful and are taking place in an open public space… Despite this, the police are forbidding us to bring in tents, poufs and pillows,” the parents say. “These actions contain signs of obstructing the right to assemble, discrimination and abuse of authority.”
They add that remaining outdoors without basic items poses health risks. One parent required medical assistance on April 27, while another fainted during the night of April 26, they say.
The parents also claim that during an April 20 protest, children with Duchenne were not allowed to enter the government administration building to present their demands.
Duchenne muscular dystrophy is a rare genetic disease that causes progressive muscle degeneration and is typically life-limiting, with patients living on average into their mid-20s to early 30s.
Around 100 patients are registered with the condition in Georgia. Families are calling on the state to fund medications that they say can slow the progression of the disease. They note that some of these drugs have been approved by the US Food and Drug Administration and the European Medicines Agency.
The Ministry of Health says the long-term effectiveness and safety of the treatments have not been fully established and has declined to finance them.
Parents say they have been in communication with Health Minister Mikheil Sarjveladze for more than a year, but describe the process as unsuccessful. They have also been seeking a meeting with Prime Minister Irakli Kobakhidze for several months.
Since April 20, some parents have been taking turns staying overnight outside the government administration as part of their protest.
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Health minister: Duchenne medicines do not cure or prolong life
Parents appeal to government, Patriarchate over Duchenne treatment access
