Should access to clinical trials and innovative medicines for childhood cancer depend on successful crowdfunding? “This is inhumane. Belgian children must have the same smooth access to the best care as any other child with cancer in Europe.”

Brussels, January 31, 2025 – In the lead-up to World Cancer Day (February 4) and International Childhood Cancer Day (February 15), KickCancer calls for seamless access to international clinical trials and innovative medicines for Belgian children with cancer. “It is inhumane that parents today must raise hundreds of thousands of euros through crowdfunding to secure the most innovative treatment for their child diagnosed with cancer,” says Delphine Heenen of KickCancer. The foundation seeks a structural solution with the next federal government to ensure access without additional stress or financial burden.

Every childhood cancer is classified as a "rare disease," which has two major consequences for treatment development: first, it is not profitable to develop drugs for children with cancer, making it a low priority for pharmaceutical companies. Secondly, clinical trials must be conducted as efficiently as possible, in a limited number of countries, to recruit enough patients within a short timeframe. As a result, clinical trials are typically funded by academic institutions or philanthropic organizations and operate with significantly smaller budgets. These trials are only set up in a few countries to maximize efficiency— in places where social security systems cover all related medical costs.

For Belgium, a small country, this poses a major problem: many cutting-edge trials are not conducted here, meaning Belgian patients must travel abroad to access innovative treatments. Ideally, social security should cover these costs, as participating in clinical trials not only provides hope to patients with no remaining standard treatment options but also advances scientific research. However, due to differences in interpretation between Belgium and neighboring countries, Belgian children face an uphill battle to obtain reimbursement for participation in international clinical trials—an additional burden on top of their illness.

KickCancer therefore calls on the next Belgian government to urgently establish a science-based decision-making process to fund the medical costs of Belgian children with cancer who need to travel abroad for a clinical trial or innovative treatment.

Rejected by social security due to "extras" or being "too innovative"

Belgium applies a much stricter interpretation than its neighbors (e.g., France) regarding what social security should cover in the context of a clinical trial. Any consultation, imaging, or medical intervention not listed as "standard care" is considered an "extra" and leads to the rejection of the entire reimbursement request. As a result, the full cost of participation in an international clinical trial falls entirely on the patient’s family.

Promising CAR-T treatment in Rome recommended by experts

This is precisely the situation two Belgian neuroblastoma patients, Lotte (12) and Judith (7) are faced with. Their best treatment option lies in an innovative anti-GD2 CAR-T cell therapy developed at Ospedale Pediatrico Bambino Gesù in Rome. The phase I clinical trial for this treatment has been completed, and researchers have identified the specific patient group that could benefit. They are now in discussions with the European Medicines Agency (EMA) regarding the phase II trial design.

In the meantime, patients from across Europe continue to travel to Rome to access this promising and innovative new treatment, which experts recommend when standard treatment options have been exhausted.

Patients from France are evaluated by a committee of neuroblastoma specialists, while those from Denmark are assessed by a panel of oncologists. If these French or Danish experts confirm that a patient is likely to benefit from the treatment, their travel and treatment costs in Rome are fully covered by the French or Danish social security system.

“This is a situation we are encountering more frequently. Patients in a desperate situation regain hope thanks to a valuable and scientifically well-founded treatment that we cannot offer quickly enough in Belgium. There is an urgent need for a structural solution for these very rare cases,” says Bram Dewilde, pediatric oncologist at UZ Gent.

The families of Belgian patients Lotte and Judith are seeking €315,000 to travel to Rome.

For Lotte and Judith, the situation is drastically different than in France or Denmark. Their families must rely on crowdfunding—sharing their cancer stories in newspapers and on social media to seek public donations. Only if they successfully raise €315,000 will they will have access the best available treatment for their high-risk neuroblastoma.

“I find it devastating that I must put Lotte and our misery in the public eye just to raise money for the CAR-T treatment in Rome that gives her the best chance of recovery. On top of that, we need to deal with the stress of traveling to a country where we don’t speak the language and don’t know the hospital. This innovative treatment gives us hope, which is why we’ve named our fundraising campaign ‘Hoop voor Lotte,’” says her mother, Barbara.

KickCancer and disease experts estimate that two to three Belgian patients per year would need access to this treatment in Rome until it becomes available in Belgium in a few years. Other patients will face similar struggles for different innovative treatments or clinical trials unless a structural solution is put in place.

Need for a structural framework in coordination with the Belgian government

There is also an urgent need for a structured validation process for patients with other types of childhood cancer, ensuring easier access to innovative medicines or clinical trials.

What do we prefer as a society? A social security system that finances treatments recognized by European experts as the best option—or multiple crowdfunding campaigns appearing in the media every year?

“We are calling on the new government to take urgent action and, together with KickCancer and the Belgian Society of Paediatric Haemato-Oncology, establish a validation process that ensures Belgian children with cancer can easily access clinical trials or innovative treatments in Europe, with their treatment and travel costs covered by social security. We strongly oppose the alternative of crowdfunding: patients deserve privacy. Furthermore, as a society, we must not risk public confusion between legitimate, evidence-based treatments abroad and overpriced so-called ‘miracle treatments’—in other words, fraudulent treatments that exploit patients’ despair and enrich dishonest individuals who exploit patients’ despair and enrich dishonest individuals,” concludes Delphine Heenen, founder of KickCancer.

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