“The children had no official status, and that status has now been granted to them. A multidisciplinary team has been established, and today specialists are examining each child individually. Most significant of all, however, was today’s decision regarding the medications,” Zakro Gvishiani, the parent of a child with Duchenne muscular dystrophy, stated as he addressed journalists following the meeting with Prime Minister Irakli Kobakhidze at the Government Administration.

Gvishiani described the past year as an extraordinarily difficult struggle, one that had been demanding not only for the parents, but for the state as well.

“Allow me to reflect on a year of struggle. First and foremost, the children had no official status, and that status has now been granted. Naturally, they now have a social support package and free access to physiotherapy. The second great victory was the establishment of a multidisciplinary team, with specialists now examining each child individually. The third, and most important, was today’s decision on the question of medications. This is a momentous achievement.

None of this has been straightforward; it has been an extraordinarily difficult struggle, not only for the parents, but for the state as well. Because in many countries, including developed ones, the full package of what I have just described: official status, a multidisciplinary team, and access to medications, is not something that can be easily achieved in the near term, even in the most advanced nations.

First and foremost, I extend my deepest and heartfelt gratitude to Prime Minister Irakli Kobakhidze, who personally engaged with this process and helped bring about a positive resolution in the shortest possible time after becoming involved. My thanks go to the Minister of Health, to the leadership of the Government Administration, all of whom joined this process. Thank you to every single person who, alongside our supporters, played a part in this journey. My thanks also go to the journalists who followed this issue with interest every single day. It is my sincere wish that in our country, the rights of every child and every patient be fully upheld, as the law provides,” said Zakro Gvishiani.

Gvishiani further noted that work to secure two specific medications for children with Duchenne muscular dystrophy will begin today, with active engagement to continue alongside pharmaceutical companies.

For reference, a working group will be established, comprising members from the Georgian Ministry of Health and parents of affected children. This group will be responsible for ensuring the provision of specific medications to children living with Duchenne muscular dystrophy.