Patriarchate to mediate between Duchenne families, government

A working group on the treatment of Duchenne muscular dystrophy patients will be created within the Georgian Patriarchate, parents of affected children say.

Parent Kakha Tsikarishvili says the group will include parents, medical specialists and representatives of the Patriarchate, IPN reports.

Tsikarishvili says the Patriarchate has promised to communicate directly with the government in an effort to restore dialogue between families and the authorities.

“This will be a tripartite meeting between parents, representatives of the Patriarchate and specialists, where we will agree on further steps, then there will be communication with the government,” he stated.

The parent says families raised concerns about critically ill patients who are not receiving adequate support from either the state or the medical sector.

Tsikarishvili also welcomed the launch of a free research program, noting that clinics had already contacted families. However, he says a major issue remains for patients who lose support after turning 18.

“We should have a direct dialogue with the government, so that we do not have to make unilateral statements,” he added.

Parents of children with Duchenne muscular dystrophy have been spending nights outdoors near the government administration for almost a month.

The Georgian Ministry of Health says there are still unresolved questions over the safety and effectiveness of the requested medicines, adding that long-term clinical studies have not yet been completed. The Ministry also notes that there is currently no cure for Duchenne muscular dystrophy.

Parents, however, argue the medications are already being used in the United States and Europe and claim the government’s reluctance is largely linked to the high cost of treatment.

Duchenne muscular dystrophy is a rare genetic disorder that causes progressive muscle degeneration, often leading to wheelchair dependence and life-threatening complications.