Tbilisi: A regular meeting of the Coordinating Council on Rare Diseases was held at the Ministry of Health. During the meeting, the development of a strategy for the treatment of Acondroplasia and other rare diseases was discussed. The decision of the council members begins work on the protocol for acondroplasia management, which will be attended by doctors, experts and a patient representative.
The Coordinating Council on Rare Diseases discussed different methods of treatment for acondroplasia. Among them, one of the new medicines on the market is vosoritide. It is noted that the drug undergoes early stages of implementation, therefore, there is little information about its side effects and long-term effectiveness of the treatment.
In an official letter from the World Health Organization requesting the drug, vosoritide is not included in the list of essential health medications and, therefore, there are no international guidelines. Important information points to countries such as Germany, England and Wales, where drug evaluation procedures have been halted.
In view of international practice, the multidisciplinary team working on the protocol of acondroplasia management, in the best interests of the patient’s health, will work on the justification of the use of the said drug and the selection of the groups for whom the drug will be prioritized.
The meeting was attended by Deputy Minister of Labor, Health and Social Protection, Tamar Gabunia and Ilia Ghudushauri, Chairman of the Health and Social Protection Committee of Parliament Zaza Lominadze, pediatrician, Professor Ivane Chkhaidze, Chairman of the National Council of Bioethics, Professor Givi Javashvili, People Son, Tako, a health care specialist of the United Nations Children’s Fund Silviu Domente, Head of Representative of Georgia at Ugulava and World Health Care Organization.
