“We provided detailed information regarding the medications and the ongoing process, why it became necessary to hold a permanent protest outside the government administration,” Gvishiani said.
“We are positive because very important questions were asked. We already see a willingness to receive maximum information. We agreed that a working group will be created. We will meet again and discuss individual issues.”
The parents say the protest will continue until the state agrees to fund all four medications used to treat Duchenne muscular dystrophy. They note that each child carries a different genetic mutation and therefore requires a different treatment.
The meeting lasted about two hours and was also attended by Minister of Health Mikheil Sarjveladze.
Sarjveladze described the discussions as productive.
“The issues raised by the parents are of particular interest to us and deserve attention,” the minister said.
“It is not easy to make decisions on these issues because we are talking about four different medications, each at a different stage in terms of status, condition, potential and readiness for implementation.”
The parents say another meeting with Kobakhidze is expected to take place as early as tomorrow.
Parents of children with Duchenne muscular dystrophy have been demanding that the government allow access to modern treatments for the disease. Until now, government officials have cited possible risks associated with the medications.
Earlier, the ‘Protect Iliauni’ movement raised GEL 2 million through a public fundraising campaign to support children with Duchenne syndrome.
Duchenne muscular dystrophy is a severe genetic disorder that primarily affects boys and causes progressive muscle weakness. Around 100 people are living with the condition in Georgia, most of them children.
