The Prime Minister of Georgia, Irakli Kobakhidze, says an agreement has been reached with parents of children with Duchenne muscular dystrophy on access to medicines, and that work on their purchase will now begin.
Kobakhidze said a working group will be established with the participation of representatives of the Ministry of Health and parents, adding that the final decision on procurement will take into account various factors, including proposals from pharmaceutical companies.
He did not specify which medicine or medicines were included in the agreement.
Health Minister Mikheil Sarjveladze confirmed that the process will continue in a working group format.
“This is critically important and necessary so that not only in the direction of medicines, but in all other directions, there is an opportunity to maximally satisfy and protect the best interests of children and patients,” Sarjveladze said.
He added that parents and patients will be the first to receive updates, with full public information to follow.
The statements followed two meetings between government officials and parents of children with Duchenne, after months of protests and public mobilisation.
Parents had been demanding access to medicines for their children, holding protests at the government administration for 45 nights. During the campaign, the Ilia Student Movement helped raise 2 million GEL for other needs of children with Duchenne.
After the latest meeting, parents said they are ending their protest and shifting to a “work mode”.
Parents have been calling for access to four medicines, including Elevidys, a gene therapy for eligible patients; exon skipping therapy, which targets dystrophin gene mutations; Givinostat, which slows disease progression; and Vamorolone, a steroid alternative with fewer side effects.
