AWARENESS ACTIONS ON PANCREATIC CANCER IN FRANCE Mariella de Bausset Secretary General A.R.CA.D. Foundation 10 October 2018 – European Parliament

The French situation An increasing incidence, and a mortality still close to the incidence Significant variations in access to care, treatment, diagnosis and specialised centers, resulting in major differences in survival An action taken by the National Cancer Institute -INCa- in 2017, dedicating a research programme to pancreatic cancer research But a general lack of awareness among policy makers and low prioritisation in public policies (in the national cancer plan or in the parliamentary debates)

What did A.R.CA.D do about this? 1 Raising awareness of the signs and symptoms towards GPs Translation and adaptation of the « Think PC » brochure Contact plan towards medical associations to disseminate the brochure Diffusion of the brochure in the GPs’ union newsletter in November 2017

What did A.R.CA.D do about this? 2 Work towards early referral and care of patients : Enquête Repère and Urgence Pancréas Study Survey launched in France, called « Enquête REPERE », to identify the loopholes in pancreatic cancer patients management As an outcome, launch of the protocole « Urgence pancréas », aiming at accelarating diagnosis and intensive care: Each patient suspected of having pancreatic cancer is included in an integrated process Care is implemented within 14 days (+/- 2 days): evaluation, nutritional and psycho-social management, pain management, thrombosis prevention or treatment, and biopsy The main challenge is to reduce the time between first contact with the hospital and treatment – This period of time is crucial for the survival of patients.

What did A.R.CA.D do about this? 3 Raising among policy makers to trigger policy change Article in Le Figaro, 24 November 2016 Building up of an expert group around the Foundation, with the support of Shire France Outreach to members of the Parliament Organisation of an institutional event, hosted by 2 Senators Multiple media fall-outs

What did A.R.CA.D do about this? 4 Addressing the regional variations Development of policy recommendations on how to address pancreatic cancer and make it a priority in French public policy… 1st regional round table in Lyon, hosted by MEP Françoise Grossetête Organisation of a set of regional round tables to assess regional variations 2nd regional round table in Marseille, hosted by the Regional Council …to be further disseminated among French policy makers, in view of the next cancer plan

What did A.R.CA.D do about this? 5 Raising general public awareness Organisation of an annual concert to raise funds for pancreatic cancer research and get public attention Diffusion of a brochure on patient journey, to foster earlier diagnosis and referral

What to do next? Continue our actions to implement the « Urgence pancréas » protocole Keep raising awareness of pancreatic cancer among policy makers, to work towards prioritisation in the next cancer plan Use the occasion of World Pancreatic Cancer Day to continue communicating and raise general awareness and knowledge of the disease

THANK YOU FOR YOUR ATTENTION!