Policy and Advocacy
Make Sense Campaign Event 2018 - Survivorship: life with, through and beyond head and neck cancer
For five years, the European Head and Neck Society (EHNS), along with the European Cancer Patient Coalition (ECPC), have laid efforts in raising awareness on the needs of head and neck cancer patients through the very successful Make Sense Campaign.
Head and neck cancers are the 6th most common types of cancer in Europe with more than 150,000 new patients diagnosed every year. It is approximately half as common as lung cancer, but twice as common as cervical cancer. Despite its severity and increasing prevalence within society, there is little awareness of head and neck cancer, and patient outcomes remain very poor; 60% of people with head and neck cancer present with locally advanced disease at diagnosis and 60% of people diagnosed at an advanced stage die from the disease within 5 years. However, for those patients diagnosed in the early stages of the disease, there is an 80–90% survival rate.
ECPC is a partner in the Make Sense campaign, working with the European Head and Neck Society, to advocate for better awareness of head and neck cancers. In 2013, ECPC and the European Head and Neck Society published a White Paper on Head and Neck cancer, which advocated for increased awareness, better prevention & treatment, standardised care, and better quality of care and quality of life after diagnosis.
As part of the 2018 Make Sense campaign, ECPC organised an event on the 9th October at the European Parliament under the theme: Survivorship: life with, through and beyond head and neck cancer. The aim was to promote better quality of life for cancer patients and survivors, as well as awareness of these cancers and call for prevention, earlier diagnosis and timely treatment.
A total of six speakers addressed the audience concerning head and neck cancer survivorship, the inherent troublesome financial circumstances that cancer patients often encounter and the functional and aesthetical after effects that, in many cases, keep them from leading a normal life.
Other topics of interest were discussed as well, for instance the need to provide people affected by cancer with the opportunity of performing a job in a working environment, and the unequal treatment that they endure when taking out an insurance policy and the increased insurance primes.
After the formal presentations, the debate was opened up to delegates. The discussion was lively and inspiring, with many thoughtful and relevant interventions from participants at the event.
In conclusion, this roundtable discussion highlighted that there is a disparity in the care of head and neck cancer patients in Europe. Early diagnosis remains vital in reducing the impact of the disease, especially in countries in Eastern Europe that have fewer resources. Head and neck cancer patient representatives from Belgium, Norway, Romania and Bulgaria all shared their experiences, which highlighted that there are a number of significant unmet needs that must be addressed to ensure head and neck cancer survivors are receiving appropriate support post-treatment. There was agreement among the group that more support is required when it comes to survivorship care in head and neck cancer and patients/survivors should be at the centre of everything when it comes to post-treatment care.
Event organised by ECPC and the Make Sense campaign, hosted by MEP Lieve Wierinck, Alliance of Liberals and Democrats for Europe (ALDE), Belgium.