POLICY-RELATED UPDATES: Joint Action on Rare Cancers (JARC)


Launch of a targeted survey on availability, accessibility and costs of essential medicines

The work in the Joint Action on Rare Cancers Work Package 9 – Childhood Cancers is now well into its second year. SIOPE and partners have made significant progress during the past months.

SIOPE in cooperation with Childhood Cancer International Europe (CCI Europe), the European Society of Oncology Pharmacy (ESOP), and the European Society for Medical Oncology (ESMO) have launched a targeted survey on availability, accessibility and costs of essential medicines for paediatric malignancies and essential palliative, supportive and pain control medicines used for children with cancer.  The survey is addressed to national representatives of SIOPE, ESOP and CCI Europe.

Preliminary results are expected for September 2018 and will inform the recommendations on access to essential therapies for paediatric malignancies at the end of the project.

Work is also ongoing in cooperation with the SIOPE QUARTET committee, the European SocieTy for Radiotherapy and Oncology (ESTRO) and the Paediatric Radiation Oncology Society (PROS) to gather paediatric radiation oncology guidelines across Europe. These will form the basis of recommendations on the availability of essential radiotherapy resources for children with cancer. The Work Package on childhood cancers also includes the topic of very rare paediatric tumours. 

GPOH and the EXPeRT group are leading the work to raise awareness on the specificities of such ultra rare entities and the corresponding research and care needs. Last but not least, PanCare in close cooperation with SIOPE and other JARC partners is translating the achievements of prior projects on childhood cancer survivorship – such as ENCCA and PanCareSurFup – into recommendations to policy makers at the national and EU levels.

More information available on the SIOPE JARC web page: https://www.siope.eu/activities/eu-projects/eu-joint-action-rare-cancers-jarc/