The KickCancer Foundation complains that not all cancer treatments for children will be refunded in our country. About a quarter of young patients are taking non-refundable medications because they are officially approved only for adults. “Parents have to cough for thousands of euros on their own and sometimes even get a loan,” says founder Delphine Heenen, the mother of a son who is fighting cancer. She is asking the government for a structural solution to the problem.
Cancer in children is relatively rare. However, in our country, it is said that about 320 children under the age of 15 get cancer every year. 180 adolescents between the ages of 15 and 19 are also diagnosed each year.
A quarter of patients, about 100 people a year, are treated with non-refundable medicines. this is, study Pediatric oncologists from UZ Leuven, UZ Antwerp, UZ Gent, UZ Saint-Luc and Kick Cancer participated.
“It’s not a very large number, but it’s about parents who are said to have to pay thousands of euros themselves for treatment, in addition to diagnosing cancer in their children,” said the founder of Kick Cancer. One Delphine Heeren says. The goal of this organization is to improve cancer treatment in children.
Heeren himself faced this problem when his son Rafael got cancer. “His treatment cost was 30,000 euros, but I know people who had to pay 125,000 euros and get a loan. This is unacceptable in a rich country like Belgium. . “
Safe and effective, but not approved
The fact that some medicines are not refundable in our country is because they are officially approved for adult use only. However, these are the standard treatments for cancer in children and are actually medicines that have been safely and effectively administered for many years.
“If a pharmaceutical company wants to approve a drug for children, it must also test the safety and efficacy of the drug for children,” said Bram De Wilde, a pediatric oncologist at UZ Ghent.
Childhood cancer is relatively rare, so pharmaceutical companies can make little money from it
“Currently, safety research is largely mandatory, but because cancer in children is rare, there really isn’t a revenue model for the pharmaceutical industry. Getting approval is more than getting approval. Often costs. ”
“Academic studies have shown that these drugs are safe and effective for children, but pharmaceutical companies do not bother to get approval and cannot get a refund.”
How much does it cost to refund those medicines?
KickCancer sought a structural solution to the problem and calculated how much additional cost our country would cost to repay the unrecognized medicine.
“We will arrive 1.12 million euros Given that Belgium’s social security costs reach millions of euros, it’s a piece of cake each year, “says Delphine Heenen. “It will save a lot of stress and financial problems for parents. For doctors, nurses, administrative staff and social workers, it will save 7,000 hours of working hours per year.”
Reimbursement will save many stresses and financial problems for parents of children with cancer
Because at this point, hospitals in particular are looking for solutions. “The first thing we do is submit a very complex file to the Riziv backdoor, the Special Solidarity Fund,” says Bram De Wilde.
“NIHDI can determine allowances individually. But it only happens in one-third of the files. For everything else, you have to look for money from the charity or the pharmaceutical company itself. But It’s all necessary. A lot of administrative work. For work, and for parents, it brings a lot of financial uncertainty when they already have the uncertainty of a sick child. “
Meanwhile, KickCancer held its first meeting with the Cabinet of Federal Minister of Health (Vooruit) Frank Vandenbroucke. “We first intend to create a list of medicines for children with non-reimbursable cancer, and then work together to find a structural solution,” says Heenen. “The Cabinet is open to it. Now it is hoped that it will change something effectively.”