“While these people [the Ministry of Health] are holding a dialogue with us, during this time countless children become dependent on wheelchairs. Several children have died over the past 8 months.
This is a progressive disease that does not allow us to wait for anything.
That is why we demand that new medications be brought in promptly,” said Tamar Gogaladze, the parent of a child with a disability, today, November 30, at the rally held in front of the Ministry of Health in Tbilisi.
Today a rally was held by the Ministry of Health in support of children suffering from Duchenne muscular dystrophy.
Duchenne muscular dystrophy is a rare genetic disease that causes early muscle degeneration; children eventually have to use wheelchairs, and in some cases the disease progresses to the point that it causes death.
However, there is already a medication that significantly slows the progression of the disease. But the medicine is very expensive, and parents cannot purchase it on their own.
This is why parents have been asking the Ministry of Health for eight months to import the medication into the country so far without success.
At today’s rally, parents brought their children and once again demanded that the ministry purchase the medication as quickly as possible, as it is necessary to save the children’s lives.
“When the government already knows in advance that if a child does not receive the medication they will end up in a wheelchair; if they do not receive it later, they will have difficulty breathing; if they still do not receive it, their heart will stop the government knows all of this in advance, so what could be a greater catastrophe?!
Why should the government hesitate, claiming this requires resources? What does it matter who is in power? Parents do not care who is in power that is completely irrelevant. Whoever is in power, this is the first obligation of the state.
Therefore, this is not a request, not an outstretched hand this is an essential need that must be met,” said Kakha Tsikarishvili, the parent of a child with Duchenne muscular dystrophy, at today’s rally.
The Minister of Health from the ruling party “Georgian Dream,” Mikheil Sarjveladze, arrived at the rally. He asked parents to continue the meeting inside the ministry.
“It has been two years, Mr. Mikheil, of promises, and not a single concrete step has been taken,” said Zakro Gvishiani, a parent, to Sarjveladze.
“I understand, but please don’t speak differently for the cameras. As before, we can go upstairs and talk,” Sarjveladze suggested.
“Mr. Mikheil, we have met eight times, and no steps were taken. These meetings brought no results that is why we gathered here. We are not the organizers of this protest; your team is responsible, you practically organized this.
This happened because of you and your team’s inaction,” Zakro Gvishiani responded.
Parents of children with Duchenne muscular dystrophy say that three to four types of medications are available on American and European markets that are necessary for treatment but the Ministry of Health does not bring them into the country.
At the rally in front of the Ministry of Health, parents spoke to try once more to make the ministry hear them and to explain why these medications must be imported.
“None of us pays taxes so that ministers get a salary raise every year and so that judges have guaranteed comfort.
We pay taxes so that children in Georgia do not go without basic necessities, do not go without essential life-saving services. We are the state, we are the country, and our taxes must be used first and foremost for children.
If the government cannot understand this, we will make them understand and we will convince them that it is their responsibility to direct our money our taxes first and foremost to children.
This is every child’s right.
Children must receive their life-saving services immediately, without obstacles, without endless promises or empty speeches behind closed doors.
Come outside again and explain it to the children! Yes, you owe them that! The Minister of Health said he could not talk to children that is wrong. Yes, you are obliged to speak to them in a way they can understand, to explain what you promise, what you are doing, and what your obligations are. The children were here today, but the minister did not speak to them. Not a single reassuring or hopeful word was said. Instead, he told several parents to come talk somewhere behind closed doors.
I am ready today to do everything in my power so children do not have to stand here simply to survive. Children should not have to fight for their survival. We are the state, we are society, and we will demand this from the government. They do not need to bring anything from home let our taxes go to our children and save them,” said one of the parents speaking at the rally.
“We are in a very bad situation. We want to make the government hear us, to help us somehow. We are exhausted, we are overwhelmed, and our little ones are suffering terribly. Before they end up in wheelchairs, maybe they could provide the medication that has already been approved in many countries. They told us they have ‘doubts’ and do not recognize this medication in Georgia that was the answer. How? If it works in America and children are doing well and showing significant improvement, why would it not work just as well for Georgian children? Let them pay attention to us this is all we ask, nothing more,” said Aza Tavadze, a parent.
Parents say they have been negotiating with the Ministry of Health for eight months, and during this time children have suffered. Because the disease progresses, several children have died.
“This disease does not allow us to wait for anything. That is why we demand that new medications be brought to Georgia as soon as possible. We do not have another few months to waste in dialogue.
If the Minister of Health thinks we will agree to more discussions and listen to the same things again, he is very wrong. We will come to negotiations only if they tell us: yes, starting next month you will receive the new medication,” said Tamar Gogaladze, the parent of a child with a disability.
One of the parents, Gia K’ruashvili, highlighted the wealthy MPs in parliament.
“When 50% of the country’s parliament are millionaires, it should be a sacred duty for each of them to help and support even a few children, when parents do not have the resources to care for their own kids. We have enough of our own hardship, and in this hardship the government must do the lion’s share.
What is sad is that my child is turning 18, and when he does, he will also be removed from the rehabilitation program. Right here and now, even if they poured gasoline on me and set me on fire for something to help my child I am ready to sign for that. Not just for my child for all these children, I would do anything. At this stage, this issue is so painful that no one can cover it up. This is not hunger, this is not some social issue this is when your child looks at you to see what kind of person you are and how you defend their life. There is no step back,” said Gia K’ruashvili.
Today, parents also drafted a petition, which all parents will sign and then submit to parliament.
Parents are calling on parliament to find the necessary funds in the budget to purchase the life-saving medications needed for their children.