Make Sense campaign at the European Parliament - Press release
Brussels, Tuesday 5 November 2019
Transforming the face of head and neck cancer care in Europe
Head and neck cancer (HNC) is the sixth most common type of cancer in Europe. Yet it is considered a rare cancer because no two cases are exactly alike, and it is a multi-faceted disease. This type of cancer is curable if diagnosed in early stage. However, currently 2 in 3 of all HNC are diagnosed at the advanced stage, killing 376,000 people every year globally. Despite major advances in the treatment over the past three decades, patient outcomes remain disappointingly unchanged.
Today, MEP Patrizia Toia (S&D) hosted the Make Sense Campaign event in the European Parliament, an initiative launched by the European Head and Neck Cancer Society (EHNS) and the European Cancer Patient Coalition (ECPC). This interactive meeting raised awareness on the challenges that face people living with HNC in Europe, the latest recommendations and why it is urgent to take action.
EHNS oncologists Dr Annalisa Trama and Pr Lisa Licitra addressed the sub-optimal quality of care being offered across the EU in their article based on the experience of RARECAREnet – an information network on rare cancers. They highlighted the benefits of having multidisciplinary team (MTD) in specialised centres or networks. They ensure the patient receives the information, treatment and support that they require to recover and achieve the best quality of life possible. This approach also benefits to clinicians and will decrease the inappropriate consumption of health resources. The MDT is legally binding only in four EU countries - Austria, Denmark, France and Lithuania.
Roberto Persio, Member of ECPC Audit Committee, shared his personal experience as an HNC survivor and the lack of clear pathway, reference and support he experienced from the diagnosis stage. He explained how he had to learn to speak again after a laryngectomy and presented the various consequences HNC can have on the patient’s daily life.
His background matches a pan-European survey series launched by EHNS. Pr Ana Castro, EHNS Board Member, reported a worrying lack of awareness among the general public across Europe about HNC. Many potential symptoms and risk factors were not recognized by 77% of respondents. EHNS drew the conclusion and launched Make Sense Campaign (MSC) which runs the Annual Awareness Week every September. Its successes consist of the distribution of 300,000 educational resources, coordination of 80,000 free screening clinics, engagement in a network of policy and patient advocacy groups.
The recommendations delivered within the EU project Joint Action on Rare Cancers (JARC) where ECPC took an active role, go in the same direction. The patient’s engagement in all cancer related topics should be paired with the durability and the development of European Reference Networks - which provide with operational solutions and professional guidance - and the multiplication of Centres of excellence. Antonella Cardone, ECPC Director, explained that with its Working Group on Rare Cancer, ECPC keeps advocating and raising awareness after the project ended.
The Make Sense Campaign calls on MEPs to become patient advocates on behalf of HNC patients. Only with their help national stakeholders could be reached out to promote specialised treatment hubs and spread and implement patient guidelines. MEPs are asked to highlight to local government the need for funding further research to ensure better prevention strategies and treatment for patients. Patients, survivors and carers need them to spread the messages about symptoms, risk factors and to rise awareness about the HNC cancer in their own countries. If treated early, patients can have an 80–90% survival rate.