“This is my son Thomas. He is three years old. Naughty, smart, funny … and born with Achondroplasia.” This is how the moving call by Renee Heerkens from Tilburg begins. Through a petition she asks attention to a medicine that her son and other children with dwarf growth can use well. In other countries it is already on the market, but in the Netherlands it is not yet prescribed.
In the Netherlands, only seven children are born a year with Achondroplasia (AP), the most common form of dwarf growth. On average they become about 127 centimeters long. Mother Renee notices that her son’s daily life is already more difficult than for children of average height.
“He can’t go to the toilet without a step, he can’t go to the door handle and cycling is only possible on an adapted bike,” she explains. “The world is not designed for children like him. People sometimes speak to him as if he was a baby. And then he asks,” Why are they talking so stupid to me? ” That breaks your heart. “
So now there is a medicine, approved by the European Medicines Office, making children with AP on average twenty centimeters larger. This makes them more independent in daily life, but it is about much more than just their height, according to the parents.
“It’s not just practical problems, such as a pin device that you can’t reach or doors from the supermarket that do not open because the sensor does not see you,” says Renee. “It’s also about serious medical complications.” Think of chronic complaints, difficult operations and medical risks that other children do not have to experience. “Thomas was operated on for crushed nerves in his neck, so he could no longer breathe.”
Also on his legs he probably has to undergo a major operation. “Things like that can be prevented by this medicine, because if the children are longer, the chance of these complications becomes smaller.”
“We can order it ourselves, but nobody checks it.”
The medicine in question is called Voxzogo. The medicine is reimbursed worldwide, such as in Germany, France, Spain, Georgia and Chile. “But the doctors in the Netherlands cannot prescribe it yet, because the government does not want to reimburse it in the Netherlands,” says Renee.
Out of desperation she went searching online and there she found a website where she could order it. “But that is not affordable. And if we did buy it, there is no doctor who can guide us in using the medicine. That way we don’t know what the dosage is, and they don’t check Thomas for how he responds to the medicine.” Safe and good use of the medicine is therefore not possible if you buy it online.
“The medicine only works if you start with it at a young age.”
So they have often asked the manufacturer if they please submit a reimbursement application to the government, but they do not yet take action. “We also knocked on the government, but they also do nothing and point to the manufacturer,” says Renee. In the meantime, the clock taps. “The medicine only works if you start with it at a young age. So for Thomas and other children it is really about now or never.”
Together with other parents she started one petition which is shared a lot on social media. “We want to pick up as many signatures as possible to put pressure on the government and the manufacturer. We want them to take responsibility. Even though it is only a few children in the Netherlands a year, these medicines are important to them,” the parents emphasize.
Thomas’ parents have set up the action together with parents of other children who need the same medical treatment. In a few days they have already raised more than 11,500 euros.
Rene and other parents find it unjustified that children in the Netherlands do not receive the same medical treatment as children in other countries. “Because they do have access to the medicine there, our children just don’t get an equal chance. That really feels unfair,” the mother said.
The petition is open to signing until the beginning of September, then he is given to the Lower House.
