The Minister of Health, Mikheil Sarjveladze, was heard in Parliament while a rally of parents of children with Duchenne muscular dystrophy and their supporters was held outside the legislative building.
The parents had spent the tenth night outside the Government Chancellery. Despite not receiving permission to pitch tents, they continued a 24-hour protest for more than a week, demanding access to medicines for their children.
“Mr Sarjveladze is here [in Parliament] and we want him to hear our voice. Our children really have no time to waste, the stopwatch is on for our children’s lives and we are not going to wait another 2 years. These children must receive medicine,” parent Ketevan Ekhvaia told Publika.
“I left a child with a fever and came. What mother is happy to stand here? We know that the medicine is really effective and efficient and we want it for our children. They deserve it. Our minister is obliged to bring it to them,” she said.
She added: “This disease does not wait, if a week ago the child could hold a glass, now I leave a bottle of water so that nothing happens before I come.”
Sarjveladze was summoned to Parliament by the opposition ‘Gakharia for Georgia’ faction under the interpellation rule, where he was asked questions on Duchenne treatment, cancer care, the DRG program, and broader healthcare issues.
Responding to criticism, the minister rejected claims attributed to him.
“The ministry will continue to work for results, not for political points,” Sarjveladze said.
“I will not talk much about statements that I allegedly told some parent that if someone has less than 5 years left to live, they do not deserve medicine. Neither I nor any of our employees have ever said such a thing. We have never thought about it. This is simply a lie.”
He also rejected claims that discussions with parents focused only on pricing.
“For us, the price of medicine is neither a primary nor a secondary issue,” he said.
Addressing earlier remarks on treatment outcomes, Sarjveladze said the function of the medicines was to postpone the need for a wheelchair, adding that any improvement was important but must be safe and effective.
“Patients cannot be saved simply by spending money, the child will be saved by the right and real medicine,” he said.
Duchenne muscular dystrophy causes early muscle wasting, often leading to wheelchair dependence and fatal outcomes. The initiative group says around 100 children with DMD are registered in Georgia.
For more than a year, parents have demanded that the state import drugs approved by the US Food and Drug Administration (FDA) and fund periodic studies.
Related stories:
Parents appeal to government, Patriarchate over Duchenne treatment access
Health minister: Duchenne medicines do not cure or prolong life
