As if We Gave Out the Medication That Would Change Everything – Prime Minister on Children with Achondroplasia

Parents have been asking for state funding for Voxzogo drug for over a year. After months of rallying outside of the Ministry of Healthcare and fruitless meetings with the ministry’s leadership, they moved the rallying to in-front of Government Administration building, where they’d already spent six nights demanding a meeting with the Prime Minister. Irakli Gharibashvili did not meet the demand as of today. 

“I want to express full compassion for the parents of children suffering from achondroplasia. I want them to know that the state and the government are by their side, and we will do whatever it takes. But I want to ask them not to allow themselves to be used as tools for this political ploy, knowingly or unintentionally. We know full well and want to remind everyone, that no one, none of the politicians now involved in this campaign minded the fate of these children while they were in power, nor when they moved to opposition. It is clear that they are trying to use the most vulnerable and ill-fated of our society and exploit their suffering for their personal political gain, which is immoral. This is depraved, and the lowest behavior. By leveraging people with this rare genetic disease, they seek to achieve certain political goals and dividends.

As for this issue in general, I want to clarify to the public that the government has not refused to finance this medication; neither the minister, the deputy, or anyone from our government. I want to explain to our society, above all, our precious parents, who… I understand their emotions, I understand their stress.

In recent days, people uninitiated into this matter have simply presented this issue, giving the kids medicine, as though everything would change if we the government gave out the medication. They even shamelessly frame it as if their lives are in danger, which is a blatant lie. You know, I also know some people whose children carry this diagnosis and their lives are not in danger. There are many famous people among them around the world who are successful and they cannot be discriminated against. This is what we need to strive towards,” stated Gharibashvili.

The Prime Minister reiterated recent statements from the Ministry of Healthcare according to which the medication requires further research, pointing out that “too much misinformation” is being spread about this matter.

“This drug was invented by an American company, and the country itself where the medication was created is not financing it yet. You get how simple things are, right? They are awaiting the completion of the fourth phase to finish trial research and determine the side effects, and only after this, we hope, the matter will move forward. Great Britain, another super nation, is the leading country that initiated this program and, if I’m not mistaken, aborted it. There are ongoing discussions about this in Europe.

As members of the World Health Organization, we rely on their guidelines and instructions. A few days ago, a WHO representative, who is currently in Georgia, came out and explained that the WHO does not yet recognize this drug and does not recommend its financing, but we also see that a lot of misinformation has been spreading.

Finally, I would like to say that we are not saying no, my dear citizens. This of course is not a money matter whatsoever. This may add up to around 10 million which is not a critical number to us, but, god forbid, if administering this medicine can worsen or complicate the health condition of these kids, this will fall on our shoulders, the government, and we of course don’t want this to happen.

That’s why we need to wait. I want to address these children’s parents, the Ministry is ready to go through this process together, this path. Let's wait for the final verdict of the World Health Organization, their instructions, and then this program will be launched.

None of the 200 countries of the world are funding the treatment with this drug, and they are telling us that Georgia should be the exception from 200 countries and take the completely irresponsible and populistic first step of initiating this program, which is unacceptable.

If we were populists, we would probably allocate this 10 million and start financing, but this of course is not right. We are a lawful state, we act according to laws and regulations, and of course rely on more qualified opinions. Therefore, I want to reassure you that everything will be okay; we will wait a few months and keep updated; we are in contact with this drug’s manufacturer, WHO, European nations, and everyone, America, and as soon as the said uncertainties will be resolved, multiple nations will start treatments according to this guideline, and we will join the program. This is our stance.’’ – said the Prime Minister.

This statement by Irakli Gharibashvili is unsatisfactory to the parents, who are keeping up the protest and still demand a meeting with him.

Achondroplasia is a rare genetic disease that affects one in 20-30 thousand children. It affects the development of certain bone tissue, especially limbs – arms and thighs. Those suffering from achondroplasia grow disproportionally. The height reaches about 120 centimeters, with normal body size, but short arms and legs. Children with achondroplasia may be more prone to developing breathing and neurological conditions.

Voxzogo, produced by the company BioMarine, is the first drug for the treatment of achondroplasia. In 2021, it reached FDA certification as a growth enhancement drug for children ages of 5 and older. In the same year, Voxzogo has been approved by the Europe Medicines Agency (EMA) as well. In June 2022, the medicine was also approved by Japan's Ministry of Health, Labor, and Welfare, with no minimum age limit.

Georgian parents plea that they have no time to waste because the medication becomes less effective as the kids grow older.