During KickCancer's 2022 Patients’ Conference, we drew attention to the fact that children with cancer often lacked easy access to certain medicines that are part of standard treatment guidelines but are marked as "off-label”.

Hard work has paid off: since 1 January 2024, a list of more than 50 off-label drugs is now reimbursed in Belgium for children with cancer. The result of constructive collaboration with NIHDI (INAMI/RIZIV) and the cabinet of Minister of Health Frank Vandenbroucke.

What at are these off-label drugs we fought for?

They are treatments widely recognised as standard of care in paediatric oncology, yet they are not officially approved for use in children. This is simply because the pharmaceutical companies never applied for approval for paediatric use. And when a drug is not officially approved, it cannot be reimbursed — even if it is routinely used in clinical practice.

This situation placed a significant emotional and financial burden on families and added considerable pressure on doctors, who had to find alternative ways to ensure that children received the medicines they need, free of charge, as they should.

Structural progress for the future

In 2024, we not only secured the reimbursement of a list of more than 50 off-label drugs, but also obtained a commitment that this list would be updated regularly, as new drugs become recognised as standard of care. 

To be continued.

Learn more about KickCancer’s other advocacy efforts here.