HRC expresses solidarity with the children diagnosed with Achondroplasia and their parents who have been spending nights for two weeks in front of the Government’s Chancellery. They are requesting allocation of funds needed for the drug to treat their children. It has been 16 months since the parents demand from the State to purchase the medicine.
Achondroplasia is a disorder of bone growth that prevents the changing of cartilage to bone, particularly in the long bones of the arms and legs; It is characterized by dwarfism, anomalous development of the backbone and head size. BioMarin company has developed a medicine Vosoritide that can help people with achondroplasia. The medication has already been approved by the US Food and Drug Agency (FDA) on the one hand and by the European Medicines Agency (EMA), on the other hand. In 2021, the average price of treatment was USD 300,000 .
A number of studies were conducted on medicine. One of the studies where 121 children 5-17 years of age diagnosed with achondroplasia participated, reported an increase in height after receiving the drug. It should be noted that the drug may also have some side effects like dizziness due to low blood pressure, fatigue or nausea. In order to reduce the side effects, patients must follow certain medical procedures.
Despite the side effects and risks associated with the drug, EMA found that beneficial properties of Vosoritide far outweigh the risks associated with the drug, as Vosoritide facilitates the growth in height of the individuals diagnosed with achondroplasia and eases them the fulfilment of daily activities. The drug therefore was authorized by the EU.
We can only welcome the statement made by the Deputy Health Minister promising to fund the costs of rehabilitation, psychotherapy, social services or other allowances for the children diagnosed with achondroplasia. However, given the reality that achondroplasia can be cured by a certain drug, the rate of funding the services may not be characterized as sufficient.
Further, we are happy to hear about the consultations taking place regarding Vosoritide with the World Health Organization, European Organization for Rare Diseases and the producers of the drug. Another good news is the creation of a working group of experts to develop the protocol for the drug. Thus, it will be especially important the process not to procrastinate. For this is the case when delay in every day would be critical for curing the child.
According to the Constitution of Georgia, it is the duty of the social state to provide health and social protection to individuals. Residents must have access to quality health care services.
Among the international treaties of Georgia, there is the Convention of the Rights of the Child, Article 6 of which provides that States Parties shall ensureto the maximum extent possible the survival and development of the child. Further, the State shall respect the right of the child to receive the health care services in full and enjoy the means of treatment and rehabilitation. The State must show the aspirations that no child’s rights are infringed and that every child has access to quality health care.
According to Article 11 of the Code of the Rights of the Child, the child has the right to health care to the greatest standards possible. Moreover, the State may be capable of providing the rights only through accessible healthcare services.
Stemming from the above, we call on the Minister for IDPs, Labor, Health Care and Social Affairs not to delay the process of authorization and funding of the drug, so the rights of the children to healthcare are respected dully.
We also call on the Ministry of Interior to respect the freedom of assembly recognized by the Constitution of Georgia. It is inadmissible for law enforcement officers to restrict the freedom of peaceful assembly of protesters and also the possibility to place non-permanent structures. It is of outmost significance that the police measures are directed to protect the freedom of assembly and not to interfere in the right unjustifiably.
Human Rights Center