Parents of children with Duchenne muscular dystrophy are demanding access to medication as well as the creation of a multidisciplinary medical team. This was stated by Zakro Gvishiani, Chair of the Board of the organization “Let’s Fight Duchenne Muscular Dystrophy Together,” at today’s press conference.

With these demands, the parents continue their protest in front of the Government Administration.

“We have decided to hold continuous protests. Our demand has been the same since the organization was founded. We have all the information about developments in the global pharmaceutical market and recognized medications. We want the public not to be misled and to know the truth. This process is accompanied by certain barriers, as one of the medications exon-skipping therapy - is already registered in our country. It has passed all registration procedures, safety standards, and clinical trials, after which it was recognized. It is unacceptable to claim that an approved medication may not be safe.

Our goal is to save our children - those diagnosed with this condition. They have every right to study, develop, and receive full medical care.

In the case of a disease like Duchenne muscular dystrophy, many countries today report halting or even overcoming its progression. Additionally, numerous medications are in the final stages of research. Our demand is well-grounded, especially considering that our country has joined the Convention on the Rights of the Child - all decisions, particularly regarding health, must be made in the best interests of the child. They have the right to receive full medical care and access to approved medications.

Alongside medications, we demand the creation of a multidisciplinary team. Such a team does not exist in our country. We had a meeting with the minister and discussed these issues. Almost all prerequisites were in place for establishing such a team, but unfortunately it was not created. This team would help prevent complications related to internal organ pathologies. During this struggle, we have already lost three children due to complications. We do not know what complications may arise for children with this diagnosis,” Gvishiani said.

According to him, claims that these medications are still under research in several countries and that their supply has been halted are incorrect.

“What we are demanding is justified. We take into account the potential risks associated with treatment, but those risks are minimized. We are talking about a very severe and aggressive disease, but today we can no longer call it a ‘killer,’ because treatments already exist. It could be called a deadly disease only as long as these medications are not accessible in our country,” Gvishiani stated.