Despite Protests, Health Ministry Has No Plans to Import Drugs for Achondroplasia

Despite protests from parents of children with achondroplasia, Georgian Health Minister Zurab Azarashvili said he has no plans at present to import a drug called Vosoritide into the country to treat the condition. Achondroplasia is a rare genetic disorder that causes disproportionate bone development and dwarfism.

Speaking at a press conference after the government meeting on April 3, Azarashvili said that the Interagency Council on Rare Diseases composed of pediatricians, representatives of various agencies, the Bioethics Council and the Public Defender’s Office, had not recommended that the Ministry purchase the drug “at this time”.

According to Minister Azarashvili, the Council discussed the examples of the countries where the drug has been studied; in addition, the Ministry has been in active communication with the World Health Organization and European patients’ rights organizations and given the fact that the drug is experimental and “associated with various side effects,” “no other country has started the process of purchasing the drug with public funds.”

He also noted that the drug is new and has only been approved by the U.S. Food and Drug Administration (FDA) and the European Medicines Agency (EMA), and is used “only in special cases.” The minister clarified that in many countries, including Germany and the UK the discussion about its use was stopped while the trial was still ongoing.

Zurab Azarashvili noted that the cost of an annual dose of the drug, intended for one child, is about GEL 900,000. As for the drug’s effectiveness, according to the minister, the study carried out on 60 children in different countries, showed that its maximum effect was growth of 1.6 cm per year.

Parents accuse Minister Azarashvili of lying

Parents of children with achondroplasia, who have been protesting outside Ministry of Health and the Government Administration demanding that the drug be imported into the country, accuse Minister Azarashvili of lying and say that the drug has been used “successfully” in many countries.

One of the parents claims that what the minister said about the cost of the drug was a lie and that the price of an annual dose is not GEL 900,000, but GEL 200,000. “We have been holding rallies at the Ministry of Health for three months; but unfortunately, this has not yielded any results,” another parent told reporters.

“From every meeting for a year and three months that we had at the Ministry of Health, at the [parliamentary] committee [on health] or elsewhere …. we always came out hopeful, but still the children cannot get medication treatment, nothing important has been done,” said another parent.

“Let [these children] know that you love these people, they are respected abroad, give them a chance, what will happen?! Come out, at least give us an answer,” said a protester outside the government building.

For almost a year and a half, parents of children with achondroplasia have been demanding that appropriate medicines be imported into the country. They have been protesting at the Ministry of Health for the past four months, but to no avail. On April 3, parents came to the government building to demand a meeting with Prime Minister Irakli Garibashvili, but the meeting did not take place. No other official came to speak to them.

The exact number of children with achondroplasia in Georgia is unknown. According to unofficial data, there are around 30 children with the condition.

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