We are challenged with the inescapable fact that cancer remains Europe’s leading cause of death by disease in children aged over one. Every 15 minutes, a family in Europe receives the devastating news that their child has cancer. While every year, 35,000 new childhood cancer are diagnosed and over 6,000 young people die from the disease. In addition, 60 percent of 500,000 survivors experience long-term adverse side-effects.
Although adult cancer therapies are evolving with more innovative medicines reaching Europe, childhood cancer patients are being left behind. New medicines play a crucial role in improving the quality and length of the lives for many childhood cancer patients but disappointingly this progress has levelled off.
We experience persistent inequalities in access to new and essential medicines for children and adolescents with cancer across Europe. Drug shortages are a major issue with financial barriers seen in lower income countries for standard treatment and more broadly across Europe for newly approved expensive medicines. On top of the shocking numbers above, there are up to 20 percent differences in survival rates of children with cancer among European regions.
“Although adult cancer therapies are evolving with more innovative medicines reaching Europe, childhood cancer patients are being left behind”
The elephant in the room responsible for the slow pace of change is lack of innovation. Due to their individual rarity, paediatric cancers have seen limited market innovation. Working with this very specific patient group, we take note that there has been a lack of sustainable investment and enabling policies in Europe to enhance innovation for paediatric cancers.
We cannot accept that 10 times less public funding is allocated to childhood cancer research in Europe than in the US. More funding is urgently needed, and we urge Europe to strengthen its position as a leader in childhood cancer research.
Although we continue to witness issues and inequalities in access to medicines in the standard treatment of paediatric malignancies throughout Europe, the new Europe’s Beating Cancer Plan, Cancer Mission area and Pharmaceutical strategy hold great potential for positive change.
Within this new landscape, we call for a coordinated oversight of the implementation of all paediatric measures within these three major European programmes, with the aim of reaching the principal objective of curing more children, curing them better and tackling inequalities.
You might wonder how exactly we can foster progress. Why are the existing regulations not accelerating a more enabling environment for research and development of new medicines for paediatric cancers?
In the first 10 years since the implementation of the EU Paediatric Regulation, only nine anti-cancer medicines were authorised for a specific paediatric cancer indication, in comparison to over 150 for adult cancers.
The Orphan Regulation was also unable to serve paediatric cancer patients: between 2000 and 2016, 70 percent of anticancer medicines authorised for an orphan indication in adults that had potential relevance to children were not explored in this population. This is simply not good enough as children and adolescents are still dying of cancer across Europe.
“Although we continue to witness issues and inequalities in access to medicines in the standard treatment of paediatric malignancies throughout Europe, the new Europe’s Beating Cancer Plan, Cancer Mission area and Pharmaceutical strategy hold great potential for positive change”
Together with Childhood Cancer International Europe, we put forward 6 Key Recommendations for Paediatric Cancers that should be urgently addressed in the revision of EU legislation on medicines for children and rare disease, and considered in the implementation of Europe’s Beating Cancer Plan and Research programmes:
- Recommendation 1: Align the Regulations with Science and Unmet Needs of Children
- Recommendation 2: Ensure Child Specific and First-In-Child Innovation
- Recommendation 3: Implement Multi-Stakeholder Cooperation and Prioritisation as a Standard
- Recommendation 4: Allocate Public Investment in Medicine Development for Children
- Recommendation 5: Align Global Regulatory Environment
- Recommendation 6: Ensure Equal Access to Essential and Novel Anticancer Medicines and to Supportive Care Medicines
The EU’s newest initiatives in the field of cancer and pharmaceutical policy offer the prospect to address major unmet medical needs in paediatric and adolescent cancer, and we encourage policymakers to seize this chance to make a momentous change for our youngest citizens.
For more information: www.siope.eu
Follow us on Twitter: @SIOPEurope
This article reflects the views of the author and not the views of The Parliament Magazine or of the Dods Group