Cancer in children is relatively rare. Yet in our country, such 320 children under the age of 15 to be told they have cancer. Also 180 young people between the ages of 15 and 19 are diagnosed every year.
A quarter of the patients, about 100 per year, are treated with medicines that are not reimbursed. This is apparent from a study in which pediatric oncologists from UZ Leuven, UZ Antwerp, UZ Gent, UZ Saint-Luc and KickCancer have cooperated.
“It’s not about very large numbers, but about parents who, on top of their child’s cancer diagnosis, are told that they will have to pay thousands of euros for the treatment themselves,” says Delphine Heeren, founder of KickCancer. The goal of the organization is to improve cancer treatments for children.
Heeren herself was confronted with the problem when her son Raphaël got cancer. “His treatment cost us 30,000 euros. But I also know people who have paid 125,000 euros and have had to take out a loan. That is unacceptable in a rich country like Belgium.”
Safe and effective, but not approved.
The fact that some medicines are not reimbursed in our country is because they are officially only approved for use in adults. However, these are medicines that are standard treatment for cancer in children and have been administered safely and effectively for years in practice.
“If you as a pharmaceutical company want to have a drug approved for children, you also have to test the safety and effectiveness of the drug on children,” says pediatric oncologist Bram De Wilde of the University Hospital Ghent.
Investigating safety is now largely mandatory, but because cancer in children is rare, there is not really a revenue model for the pharmaceutical industry. They often have more costs to get the approval in order than they can earn from it.”
“We know from academic studies that these drugs are safe and effective in children, but because drug companies don’t bother to get approval, they can’t be reimbursed.”
How much does it cost to reimburse those medicines?
KickCancer asks for a structural solution to the problem and had it calculated how much extra it would cost our country to pay back the unrecognized medicines.
“We arrive at 1.12 million euros per year, a piece of cake when you consider that the costs of social security in Belgium amount to millions of euros,” says Delphine Heenen. “It would save parents a lot of stress and financial problems. For doctors, nurses, administrative staff and social workers, it would save 7,000 work hours annually.”
Because at the moment hospitals, among others, are looking for solutions themselves. “The first thing we do is submit a very complex file to the Special Solidarity Fund, a backdoor of the Riziv so to speak,” says Bram De Wilde.
“The NIHDI can decide on an individual basis to make an allowance. But that only happens in a third of the files. For all the others, we have to look for money from charities or from the pharmaceutical company itself. But that all requires an enormous amount of administrative work. work and for parents it brings a lot of financial uncertainty, at a time when they already have the uncertainty of a sick child.”
KickCancer has meanwhile held a first meeting with the cabinet of Federal Minister of Health Frank Vandenbroucke (Vooruit). “The intention is that we first draw up a list of medicines for children with cancer that are not reimbursed and that we then look for a structural solution together,” says Heenen. “The cabinet is open to it, now it is hoped that it will effectively change something.”