Parents of children diagnosed with achondroplasia: Until Friday, we give 5 days and ask the government, the Ministry of Health, to tell us a reasonable time when the children will be able to receive the medicine
Until Friday, we give 5 days and ask the government, the Ministry of Health to tell us a reasonable time when the children will be able to receive the medicine, Makuna Gochiashvili, the parent of one of the children diagnosed with achondroplasia, said at a briefing near the Government Administration.
According to the parents, if they do not receive a concrete answer regarding the introduction of the medicine "Vosoritide", the 24-hour protest regime will be renewed.
"In our country, doctors created a protocol for the diagnosis of achondroplasia from scratch, which is a very big step forward. In other countries, the drug was introduced without updating the protocol because it existed before. A month ago, the draft was almost finished, it was almost ready, and a month was quite enough for them to officially approve it. However, deadlines are constantly being pushed forward, and we also have a feeling that there is a pssibily that this will be dragged out so much that the treatment becomes useless for some children. Time is crucial for these children.
As for the timing. In order for the state to be more specific with us, so that we do not have a constant regime of distrust and expectation, we ask the state to confirm when the children will receive the medicine directly. They should officially confirm that the children will receive medicine by September 30 at the latest. This deadline is important for us so that we don't have to constantly worry that they may not want to, they may not be in a hurry, they may be late to respond to the pharmaceutical company. There are signs of this. Therefore, until Friday, we give 5 days and ask the government, the Ministry of Health to tell us a reasonable period when the children will be able to receive the medicine," said one of the parents, Makuna Gochiashvili.
"I would like to appeal to the Prime Minister to get involved in the process, monitor it and speed it up. If they don't give us an answer on Friday, we will continue our 24-hour protest and will actively become strong mothers again," said one of the parents, Eka Chonkadze.
We remind you that the parents of children with achondroplasia, with a 24-hour protest regime, demanded the introduction of the necessary medicine "Vosoritide" for the diagnosis and the start of treatment for the children. As a result, the children received the disabled status and achondroplasia was added to the list of rare diseases. According to the Ministry of Health, the members of the Coordination Council set July 24 as the date for defining the position regarding the protocol.
