Parents of children with achondroplasia are planning to renew their 24-hour protest if they do not receive confirmation from the government by July 28 that their children will be able to start treatment with the medicine Vosoritide by the end of September.
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The mothers met with the government administration today and announced that they stopped protesting in May only on the condition that they would receive the medicine in September.
“The deadlines are constantly being extended, and we also constantly have the feeling that it may be extended in time so that for some children the treatment will lose its meaning. We ask the government, the Ministry of Health to tell us by Friday, to officially confirm that the children will receive medicine by September 30,” says Makuna Gochiashvili.
The parents call on Prime Minister Irakli Garibashvili to get involved and speed up the process of bringing medicine.
“Until now, the reason our children were not receiving treatment has been protocol. We hope that the work on the protocol will be completed today and that our children will receive the medicine no later than September 30. Today we are not in protest mode, we are not in favor of protest; we are mothers who demanded and demand the only available medicine for the health of our children,” said Ketevan Begiashvili.
For more than a year, parents have been asking for state funding for the rare genetic disease medication Vosoritide (brand name Voxzogo). Since April 19, they have been holding a 24-hour protest rally outside the government administration.
On April 24, at the government meeting, Prime Minister Irakli Garibashvili stated that the 10 million GEL needed for the purchase of medicine is “not a critical and significant” amount for the government. However, he also said that the lives of children with achondroplasia are not in danger and that additional studies need to be completed before the government funds the medicine. The parents stopped protesting on May 5. This decision was made after the meeting of the coordinating council working on the issue of rare diseases in the Ministry of Health promised that the work on the protocol necessary for the introduction of a drug for the treatment of achondroplasia would be carried out quickly.
According to the Ministry of Health, the deadline for the members of the Council to finalize the protocol was set at July 24. After their written confirmation, the protocol will be approved by order of the minister. The ministry says that the negotiations with the Vosoritide manufacturing company BioMarin are continuing, however, the ministry does not say anything about the deadlines for the introduction of the medicine.
