Within the 21st Annual ENETS Conference, a roundtable discussion on barriers to access high-quality care in NENs in the EU was held with some of the most prominent NEN medical experts, INCA leadership representative and the European Commission representative. Thus, a comprehensive map of the policy framework of NET care in the EU was visualized by integrating the perspectives of physicians, patients and politicians.
INCA was represented by Mark McDonnell, Past President and Chair of NET Patient Network, Ireland. INCA was also involved in the development of the EU NEN Policy Recommendations, being represented by Catherine Bouvier-Ellis, Past President and CEO of Neuroendocrine Cancer UK.
Prof. Philippe Ruszniewski, NET expert and Gastroenterologist, Past President of ENETS, presented the history of developing recommendations of EU NEN policy recommendations by ENETS and partners since 2015 and a review of the achievements and gaps so far.
The discussion of the major issues of improving NEN care in the EU included: Nichola Larkins, DG SANTE, European Commission; Prof. Martyn Caplin, UK; Dr. Rocio Garcia-Carbonero, Spain; Prof. Massimo Falconi, Italy; Prof. Eva Tiensuu Janson, Sweden; Dr. Anna Koumarianou, Greece; Prof. Marianne Pavel, Germany; Prof. Catalina Poiana, Romania; Mark McDonnell, INCA representative.
NETs are beyond the definition of rare
Mark McDonnell pointed out that the prevalence of NETs is so high, it goes beyond the definition of rare. Prof. Caplin noted that in terms of prevalence NETs are in the top 15 cancers and have to be considered with a different strategy.
EU NEN guidelines: the community has made contributions for recommendations; policies have not been implemented yet
ENETS has been contributing actively in developing EU NEN recommendations for improving the NET patient journey in EU in partnership with INCA and other NET organizations. The first recommendations were delivered to the EU institutions in 2015. The review of the achievements since 2015 shows that the main issues and messages have been relayed and some of the framework has been founded, but policy implementations at the level of EU and Member States are yet to occur.
The collaboration of ENETS and INCA has produced results in addressing the issues of awareness, education, pathways, equal access. However, EU still needs to tackle the issues on the Member States level to improve the patient journey. A positive example is the introduction of NETs within the European Reference Network by including a workstream in ERN EURACAN. ENETS has expanded accreditation of specialist centers but there is still no common framework of support and referral at the Member States level.
Mandatory referral and network support in clinical trials
Introduction of mandatory patient referral to specialist centers and network support in clinical trials across EU shaped the consensus among medical experts, patients and politicians. So far, EU policy on cancer has not addressed NETs. These major issues – ensuring access to NET specialists, knowledge and care standard pathways united all perspectives in recommendations for further action.
Mark McDonnell noted that we just need to make sure that all recommendations will be implemented and we need to go forward with ensuring referrals for patients and network support in research.
