A “reasonable decision” must be made on providing medicines for children with Duchenne syndrome, Prime Minister Irakli Kobakhidze has said, adding that all risk factors, including what he called the “pharmaceutical mafia,” should be taken into account.
Speaking to journalists, Kobakhidze said authorities must ensure public funds are spent efficiently when responding to parents’ requests for access to treatment.
“A reasonable decision must be made, taking into account all risk factors, including the interests of the ‘pharmaceutical mafia’. This is one of the important factors,” he said.
He added that state spending decisions must be justified and result-oriented.
“The main thing for us is to make reasonable decisions on all issues so that every penny from the state budget is spent wisely,” Kobakhidze said, adding that “no one will spare even a billion if a specific decision is aimed at a specific result.”
The remarks come as parents of children with Duchenne syndrome continue daily rallies and weekly marches, saying they will not stop protesting until their demands are met.
Vamorolone, Givinostat, Exon-skipping therapies, and Elevidys — authorized by the US Food and Drug Administration (FDA) and the European Medicines Agency (EMA) — are the treatments that parents of around 100 children with Duchenne muscular dystrophy have been requesting to be imported into Georgia for the past year and a half, but have not succeeded.
Georgia’s Health Ministry says there are still unresolved questions regarding the safety and effectiveness of the requested medicines, noting that definitive clinical studies have not been completed. It adds that there is currently no drug that can be considered a cure for Duchenne muscular dystrophy.
Duchenne muscular dystrophy is a rare genetic disorder that causes progressive muscle degeneration, primarily affecting children.
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Parents appeal to government, Patriarchate over Duchenne treatment access
Health minister: Duchenne medicines do not cure or prolong life
