Tbilisi: Mikheil Sarjveladze, Georgia’s minister of health recently met the parents of children with Duchenne muscular dystrophy. The minister was accompanied by many health experts and officials of patients organizations.
This meeting with parents of children with Duchenne muscular dystrophy was held in the Ministry of Health to raise awareness among parents. Parents were educated about the basic rights of these children and measures to protect them.
It is worth noting that the children, parents and other attendees of the event received detailed information on the drugs for the treatment of the mentioned syndrome which are still in the research phase.
The minister assured that after successful trials the drugs will be supplied to medical centres across the country so that the maximum number of people can benefit from subsidised drugs.
At the same time the minister said the main priority for the central government and health ministry is protecting the health and interests of each patient. Accordingly the Ministry is planning to receive the latest data on a permanent basis to know how drug research will develop and what the final results will be.
According to health minister Mikheil Sarjveladze the decision has been taken to provide these children with all necessary facilities and treatment. Notably Duchenne muscular dystrophy is a rare, genetically determined disease with progressive muscle damage.
According to the health ministry sources at this stage within the framework of the state program “Treatment of patients with rare diseases is set as a priority of ministry and patients with Duchenne muscular dystrophy are provided with the steroid drug Deflazacort.”
It is worth noting that the meeting also discussed issues of creating a disease management protocol and managing other medical indications or complications caused by Duchenne muscular dystrophy.
The meeting was held at the Ministry and attended by the Director of the National Health Agency, Koba Zurabishvili; Deputy Director Ekaterine Sharadze; Head of the Strategic Development and Analytics Department, Lela Sulaberidze; Head of the Health Protection Policy Department, Irine Javakhadze, and other Ministry representatives.
