Children with cancer are often prescribed non-refundable adult medications. “Some parents have to take out a loan.”
Cancer in children is rare. However, the disease affects about 320 Belgian children under the age of 15 and 180 children between the ages of 15 and 19 each year.
The good news: Survival rates have improved dramatically, and 80 percent of all children with cancer are still alive five years after diagnosis.
The bad news: No pediatric cancer drug has been added. Between 1995 and 2021, the European Medicines Control Organization (EMA) approved more than 169 cancer drugs for adults. For children, it was 16, according to a recent study in the European Journal of Cancer.
- There are very few children’s cancer drugs on the market.
- Pediatric oncologists prescribe medications developed for adults, which they know from their research are also clinically beneficial for children.
- This medication is not always reimbursed, so parents experience high bills.
‘Pharmaceutical companies do very little on childhood cancers, although you have to say this is very difficult,’ says Delphine Henin, who founded the Belgian patient organization KickCancer in 2017. Her 17-year-old son, Rafael, was diagnosed with a bunion in the foot in 2013, at the age of nine.
We require automatic reimbursement of medications prescribed to children as part of standard treatment.
Because there are few cancer drugs for children, pediatric oncologists prescribe nonprescription drugs: drugs designed and approved for adults that they find clinically beneficial for children.
“This is about cancer drugs that are decades old but also new for adults,” says pediatric oncologist Bram De Wilde (UZ Gent). In the United States and Europe, drug companies have had for years to add a pediatric research plan to their approval file for a new drug. For example, there should be treatment options for children.
But these studies often do not extend beyond the drug’s safety in children. “The last phase study was not always done in children and was submitted to the European Medicines Control Authority,” says de Wilde. Such a study looks at the effectiveness of the treatment. “That’s why this drug is not compensated, even though we know from our academic research that it is effective and that we administer it effectively.”
As a result, one in four parents of children with cancer finds it difficult to pay for unreimbursed cancer drugs each year, estimates KickCancer, which organizes a conference on Saturday with all the participating representatives.
“I never figured it out myself,” Henin says. Her son, Raphael, has had three relapses. In 2016 alone we paid €30,000 for one type of unclassified cancer drug, chemotherapy that was not reimbursed at the time. We had to rely on our savings.
I also know parents who had to take out a loan to pay a bill of 125,000 euros. How high unpaid drug costs will be will depend on factors such as age, medication and type of cancer.
I know two parents who had to take out a loan to pay a bill of 125,000 euros.
According to KickCancer, together with UZ Gent and consultant Bain, parents in our country together spend 1 million euros each year on non-reimbursable medicines to treat childhood cancers. “This number goes back to 2019 and may be higher in the meantime,” Henin says.
UZ Gent is trying to help parents cover the costs, says pediatric oncologist Bram De Wilde. We submit the files to the RIZIV / INAMI Special Solidarity Fund for a benefit. This usually only happens in one in three cases.
We also invite charities and sometimes pharmaceutical companies to provide the medicine for free. But all of these steps require a lot of management and create uncertainty for patients.
Therefore, KickCancer is calling for a structural solution. “We require that nonprescription medications as part of standard pediatric treatment be automatically reimbursed,” Henin says. “We also suggest that people from RIZIV/INAMI and pediatric oncologists meet each year to find out what medications are for each type of childhood cancer.”