Parents of children suffering from Duchenne Muscular Dystrophy (DMD) are demanding the provision of necessary medications. As Zakro Gvishiani, Chairman of the Board of the “Fighting Together Against Duchenne Muscular Dystrophy” organization, stated at today’s press conference, one of the parents’ key demands is also the formation of a multidisciplinary team.
“We have decided to hold protests on a continuous basis. Our demand has remained unchanged since the organization’s inception. We have full information regarding developments in the global pharmaceutical market and recognized medications. We want the public to know the truth and not be misled.
This process is hindered by certain barriers, despite one of the drugs—’exon-skipping’—already being registered in our country. It has passed all stages of registration, safety verification, and clinical trials, and was subsequently approved. It is unacceptable to suggest that a recognized drug might be unsafe. Our goal is to save our children who live with this diagnosis. They have every right to learn, develop, and receive comprehensive medical care.
Regarding a disease like Duchenne Muscular Dystrophy, many countries today claim it is possible to halt the progression of the illness and overcome it. Furthermore, numerous medications are in the final stages of research. Our demand is well-founded, particularly as our country is a signatory to the Convention on the Rights of the Child, which dictates that all decisions, especially those concerning health, must be made in the best interests of the child.
Children have the right to receive comprehensive medical care and approved medications. Alongside the drugs, we demand the creation of a multidisciplinary team. No such team exists in our country. We met with the Minister and discussed these issues. All the prerequisites for forming such a team were nearly in place, but unfortunately, it was never established. This team would help prevent complications related to internal organ pathologies. During our struggle, we have lost three children to complications. We do not know what further complications may arise for children with this diagnosis,” Gvishiani stated.
Ministry of Health of Georgia: No medication for Duchenne disease exists
