Georgia’s Health Minister Mikheil Sarjveladze responded to the protest by parents of children with Duchenne muscular dystrophy, saying the medicines they are demanding access to are “dangerous to health” and do not prolong life.
“The demand is for drugs whose function is not to save life, not to cure, nor to prolong life. The function of these drugs is only to relieve the patient of the need for a wheelchair,” Sarjveladze said.
He added that, “there is no drug in the world today that claims to cure Duchenne muscular dystrophy.”
“There are only medicines that claim to slow down the progression of the disease to the point where the need for using a wheelchair can be postponed for one to three years. I also hope and wholeheartedly support that such a medicine will be created in the near future, which will ensure everyone’s health,” he said.
Meanwhile, parents of children with Duchenne muscular dystrophy and their supporters spent the night outside the Government Administration building in Tbilisi, beginning a 24-hour protest demanding access to treatment.
Police reportedly did not allow protesters to bring poufs into the square in front of the administration building. As a result, some parents spent the night in the adjacent parking area, while others remained in the square, sitting on wooden benches amid cold nighttime temperatures.
The protesters are demanding that the state purchase and finance modern medicines already used in other countries, which they say slow the progression of the disease and improve quality of life for children diagnosed with Duchenne muscular dystrophy.
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