Doctors appeal to the government to ensure better communication with patients with Duchenne muscular dystrophy and their families and to develop a clear and fair policy for the management of rare diseases.
The statement is signed by about 200 doctors, with the number of signatories still growing.
“We express deep concern about the situation of patients with rare diseases, including Duchenne muscular dystrophy, in Georgia. This disease is progressive and life-limiting. Its management in modern medicine requires timely diagnosis, multidisciplinary monitoring and access to appropriate treatment,” the statement reads.
The doctors say patients and families are often left without systemic support and forced to protest to demand essential medicines and services.
“This is not only a health care problem, but also a humane and moral problem,” they say.
Parents of children with Duchenne muscular dystrophy have been spending nights outdoors near the government administration for 25 days.
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.
Related stories:
Parents appeal to government, Patriarchate over Duchenne treatment access
Health minister: Duchenne medicines do not cure or prolong life
