Solving Kids’ Cancer UK Chair of Trustees Nick Bird, along with 6 other international patient advocates including Leona Knox SKC UK’s Head of Research, and Donna Ludwinski Director of Research Advocacy Programs at Solving Kids’ Cancer in New York, today celebrate a major achievement by having the first ever manuscript authored by patient advocates working in the field of childhood cancer published in the Journal of Clinical Oncology. 

The manuscript titled When innovation and commercialisation collide: a patient advocate view in neuroblastoma, looks at issues faced in developing approved treatments for neuroblastoma, and discusses their wider applicability across the field of paediatric cancer. Through the case study of anti-GD2 therapies, the paper explores the barriers between innovation through academic clinical research and the inevitable need for commercial support leading to regulatory and reimbursement approvals to move effective therapies from trials into routine clinical use as standard treatments. 

This issue is much more poignant within rare diseases which includes childhood cancers, as there is less commercial benefit to developing compounds which have limited use. For this reason, a number of incentives exist in the field to encourage the pharmaceutical industry to accelerate progress in this area- but there are still gaps and inconsistencies to be addressed that are presented in the work published.

Journal of Clinical Oncology is an esteemed, high-impact journal, representing one of the most credible and authoritative resources for disseminating significant clinical oncology research. Articles in this prestigious publication are most often authored by medical and clinical academics, sharing the latest developments in all areas of cancer research. Whilst patient advocates occasionally feature as contributors on such papers, there are very few occasions where a publication written solely by advocates is accepted into JCO- and this will be the first for children’s cancers. 

This is an incredible achievement for authors; Nick Bird (Chair of Trustees, Solving Kids’ Cancer UK), Leona Knox (Head of Research, Solving Kids’ Cancer UK), Antonia Palmer (Executive Director, Kindred Foundation), Delphine Heenen (Director, KickCancer), Patricia Blanc (President, Imagine for Margo), Nicole Scobie (President, Zoe4Life) and Donna Ludwinski (Director of Research Advocacy Programs, Solving Kids’ Cancer). All have committed much of their lives to advocating for children with cancer, ensuring that their voices are brought to the fore. To have this and their expertise acknowledged in a leading academic journal on the subject speaks to the value of their dedication. 

On why the paper was written, and submitted to the journal, Nick Bird said “As advocates we have to find ways to deliver messages that we believe need to be heard. In respect of the necessity for all stakeholders to work together to address the major challenges in drug development for children with cancer, the reputation and readership of JCO allows us to share our advocate views directly with the scientific community, regulators, HTAs, pharmaceutical companies and beyond.” 

Children are at the heart of all we do. We strive to bring them a better future not only by supporting them and their families through their journey, and funding pioneering research, but also amplifying their voices and needs, and using our position to fight against the injustice that still exists in the field. We feel incredibly proud to have a parent-led team that is so dedicated to that mission- and congratulate them on their involvement in this important and brilliantly executed publication. 

The manuscript: When innovation and commercialisation collide: a patient advocate view in neuroblastoma is available to read online here: https://ascopubs.org/doi/full/10.1200/JCO.21.01916.