Rare cancers: A headache for policymakers

Dr Wendy Yared, Director of the Association of European Cancer Leagues (ECL), told Euractiv that several initiatives have been taken to address rare cancers.

“The 2011-2014 European Partnership Action Against Cancer (EPAAC) addressed rare cancers in its Work Package 7 on Healthcare, and again in the current Joint Action on Cancer Control (CANCON) in Work Package 6 on Comprehensive Cancer Care Networks (CCCN). Throughout the years of these joint actions, there have been meetings at the European Parliament addressing priority issues in rare cancers, notably events organised by ECL, SIOPE, ECCO, and ECPC with the Members of the European Parliament Against Cancer (MAC),” he noted.

“In addition, we should not forget that Rare Cancers Europe, created in 2008 as a multi-stakeholder initiative with members including ECL, is well supported by policy makers and this campaign has been a driving force in ensuring that rare cancers is a firm European policy agenda.  Last but not least, the EU has just launched the three-year Joint Action on Rare Cancers (JARC) in November in Luxembourg, with the aim to prioritise all rare cancers in the agenda of the EU and the Member States with regards to national cancer plans, harmonisation of practices and funding of research.”  It is important to note that the pharmaceutical industry has been active in, and continues to support these actions on rare cancers,” he added.

Referring to children and adolescents with sarcomas, Professor Stefan Bielack, who is also a Paediatric Oncologist, said, “One important aspect would be to revise the EU Regulation on Paediatric Medicines to allow a faster, more effective and more targeted drug development for children and adolescents suffering from sarcomas. More specifically, pharmaceutical companies often obtain(ed) waivers from the obligation to investigate the potential benefit of a drug in the paediatric population, if the cancer for which the drug was originally developed in adults does not exist in children”.

“In practice, however, such drugs can still be used to treat other childhood cancer types (for example, a new drug for adult lung cancer can benefit children with neuroblastoma) and, therefore, drug development should be based on the medicine’s mechanism of action instead of its specific indication,” he added.

“Another important aspect is the need to be eliminate the age threshold (often at 18 years old) differentiating adult oncology patients from the paediatric ones. This limitation often hinders their participation in important phase 2 trials that potentially allow life-saving drug development based on tumor biology.”

European Commission

• Rare diseases
• Kick-off meeting of joint action on rare cancers

Rare Cancers Europe

• EU Initiatives
• 39 political and stakeholder recommendations