Scientists, health professionals, patients and caregivers support holistic lung cancer patient care and oppose stigma.
On Tuesday, 13 June 2023, FairLife Lung Cancer Care hosted a successful online webinar on lung cancer stigma, associated with the smoking habit.
Following the “Ask the right question” campaign, first launched in Canada and Australia, and now being run for the first time in Europe, in Greece, FairLife L.C.C. raised public awareness of stereotypes, responsible for inequalities in healthcare. Nineteen (19) speakers highlighted the socio-economic implications of stigma and the impact on people, living with lung cancer as well as on disease management.
The webinar was coordinated by journalist Mrs. Christina Vidou, who contributed to the discussion by sharing personal accounts of her family experience with lung cancer.
On the opening of the event, Mrs. Korina Pateli Bell, President of FairLife L.C.C. gave a brief presentation of the campaign and the message intended against lung cancer stigma. She spoke about the teamwork required to approach the delicate issue and do justice to campaign’s participants and their messages. “Lung cancer stigma is a complicated issue, unknown to many. Most people are not aware that we often judge lung cancer differently from other cancer diagnoses, because it is associated with smoking. But the stigma is real and it affects patients, caregivers and families, regardless of their smoking history. The campaign does not “normalize“ smoking. The message is clear. Everyone deserves equal opportunities, whether they now smoke, have smoked in the past or never have tried a cigarette in their lives.”
“The most serious stigma is the lack of empathy“, stressed Mr. Konstantinos Syrigos, Professor & Director of the School of Medicine, University of Athens, Greece, stating that doctors should act as patient advocates. Mr. Syrigos spoke against the stigmatization of any form of cancer, stating the hereditary correlations, regarding lung cancer development. He pointed out that the question “Did you smoke?” is only justified for recording and initiating a therapy process, inclusive of smoking cessation.
The event was greeted by Mrs. Zoe Rapti, Member of Parliament, former Deputy Minister of Health, who referred to the lung cancer landscape in Greece and the efforts to upgrade mental health facilities. “Lung cancer stigma, associated with smoking, casts a darker shadow than the disease alone”, stated Mrs. Rapti, “Working together will leave no patient behind.“
The opening section was concluded with the online presence of Mr. Christos Apostolakos, author and stage IV lung cancer patient, who spoke about his new book “Breath of Life”. The book’s profits will support FairLife L.C.C.’s Psychosocial Support Program BREATH. « I don’t allow stigma to hold me back. I move forward with hope and positive thinking” emphasized Mr. Apostolakos.
INTRODUCTION – Lung cancer current challenges in Greece and ways to address them
The introductory section was based on the “Report – Action Plan to change the landscape of lung cancer in Greece”, elaborated in collaboration with the University of Piraeus. Speakers briefly outlined the current landscape of lung cancer in Greece and explained the necessary interventions for the benefit of people, living with lung cancer.
Mr. Athanassios Vozikis, Professor at the Department of Economics, University of Piraeus called for integrated oncological care and equal access for lung cancer patients. Mr. Vozikis presented data about lung cancer progress in Greece, referring to the aging of the population, which contributes to the increase in diagnoses. He appeared optimistic about the potential we have as a country to improve statistics with a joint and coordinated effort.
“Until recently, the word cancer was synonymous with a death penalty. Nowadays, we have biomarkers, targeted therapies and we hope cancer will be a chronic disease very soon. The state should support similar awareness campaigns and shape comprehensive care for oncology patients.”
Mr. Konstantinos Athanassakis, Assistant Professor of Health Economics, University of West Attica noted: “The stigma of lung cancer is not consistent with an inclusive Public Health system. The question “Do you smoke?” is obsolete and has been rejected by international literature. The right question is “What do you need?” Mr. Athanassakis spoke about the need for integrated care beyond access to medication, which includes timely access to therapies and biomarker testing and reimbursement for all patients.
The introductory section was concluded by Mrs. Isaia Tsaousidou, Int. President of the Association of European Journalists, who pointed out that European policy aims to implement screening for 90% of patients, meeting the criteria, by 2025. “In Greece, we lag behind in prevention and education against stigma. I can personally relate, because of my husband’s lung cancer. People in the press have a share of the responsibility. I believe now is a good opportunity to inform people, along campaigns and thematic conferences.”
The smoking stigma and the shock of being diagnosed with lung cancer
Section A discussed lung cancer stigma and patients’ approach after diagnosis.
“Doctors need to understand their patients and feel their needs” noted Mrs.Helena Linardou, Medical Oncologist, Director of the 4th Oncology Department, Metropolitan Hospital, President of the Scientific Committee of HeCOG. Ms.Linardou rejected all forms of stigma – including age stigma – , stating that age is not an exclusion criterion in any clinical trial. She believes that honesty builds a relationship of trust between doctors and patients. “It’s not about asking the question, “Did you smoke?”. It’s about the way you ask it, so as to help patients through the difficult journey.”
Mr. Adamantios Mantis, physiotherapist and lung cancer patient, asked for a “life plan” to cope with the disease. Mr. Mantis spoke about his personal experience, his feelings of guilt and remorse, the stigma that delayed his diagnosis, and the importance of psychological support. “Lung cancer is a journey that you can best navigate when someone holds your hand, as a shining light in the darkness of the disease.”
Mr. Grigoris Stratakos Interventional Pulmonologist, Assoc. Professor of Pulmonology, “Sotiria” University Hospital, spoke about doctors and teachers’ role in informing society about the impact of harmful habits, including smoking, He stressed the need to provide optimal healthcare for patients without judgement. “Every patient deserves our absolute respect and support. “The right question to address to doctors: “How do we behave towards people?” Scientific knowledge and information about disease prevention should not be confused with any responsibility of patients and in no way justifies stigma “ explained Mr Stratakos.
Mrs. Cynthia Mikkelsen, communication specialist and caregiver, referred to the age stigma she encountered, when her mother was diagnosed with lung cancer. “Stigma in all aspects leads to exclusion. I would hope to meet doctors who explain, inform and care, without judging us.”
Do you ask the right question? Don’t ask “DID YOU SMOKE?” Just ask “HOW DO YOU FEEL?”
Section B demonstrated the importance of psychological support, adjusted to patients’ needs, without stigmatization.
“One in three patients with lung cancer will develop intense negative emotions, leading to depression and anxiety disorders” supported Mrs. Zoe Sada , Psychiatrist, Senior Physician and Head of the Special Clinic of Psycho-oncology, “Sotiria” Hospital. Mrs. Sada stressed the importance of psychological support, sensitive and personalized approach and respect. “We encourage, we focus on the present and on small victories. With no criticism. Criticism is just hurtful and weakening.“
Mr. Dimitrios Papageorgiou, President of the Department of Oncology Nursing, referred to the special role of nurses as patients’ “navigators” “We spend a lot of time with patients, we get close to them, we support them.” Mr. Papageorgiou spoke about the healthcare team – doctors and nurses-, about the need to drop lung cancer stigma and the upcoming challenge of caring for oncology patients with psychiatric diseases.
The necessity of immediate psychosocial support from the state, after a cancer diagnosis was mentioned by Mr. Apostolos Kyriakis, cameraman and caregiver of his wife. “When we care for our beloved, past is irrelevant. Stigma is pointless. Instead, we listen, we respect, we give a hug.”
Through the online connection with Mrs. Mariam Theodorakis, Psychologist, Tobacco Dependency Advisor, Fulbourn Hospital, NHS Foundation Trust and collaborator of FairLife L.C.C., it was evident how patients are affected by stigma, regardless of the cultural particularities of Greece and the UK. Mrs. Theodorakis focused on the differences between the two countries in terms of available support resources and the smoking cessation framework, which extends beyond medication.
To close the event, campaign sponsors delivered a short message.
An optimistic message from lung cancer research was sent by Mr. Caius Kim, Global Director, AstraZeneca, Lung Ambition Alliance, who emphasized the crucial importance of international cooperation and raising awareness of lung cancer challenges. Mr. Kim reminded that anyone with lungs can get lung cancer, regardless of their smoking history.
Mrs. Angeliki Angeli, Chief Portfolio Value Officer Roche Hellas, spoke about the importance of supporting efforts, aimed at holistic treatment of lung cancer. She referred to the particular nature of the disease, which is receptive to targeted therapies and the issues that the National Health System should focus on, so as to assist patient’s entire journey beyond medication.
The need to address socio-economic inequalities in health was supported by Mr. Antonis Karokis, External Affairs Director, MSD Greece, who stated that the Public Health debate concludes that harmful habits, including smoking, are often not individual but socially determined decisions. Mr. Karokis emphasized the individuality of each patient and the importance of a personalized approach to people diagnosed.
Throughout the event, videos were aired, carrying messages of patients and caregivers – the faces of the stigma campaign – Christos & Vassia Apostolakou, Eric Bell, Polly Gaitani, Milka Ivanova, Maria Kalabaka, Apostolos Kyriakis, Cynthia Mikkelsen, Athina Baroufi.
We thank our supporters Lung Ambition Alliance-AstraZeneca, Roche, MSD, Novartis, Pharmaserve Lilly.
The webinar was held under the auspice of: Global Lung Cancer Coalition (GLCC),Association of European Journalists, Hellenic Society of Medical Oncology (HeSMO), Hellenic Association of Lung Cancer (HeALC), Hellenic Thoracic Society (HTS), Hellenic Society of Thoracic and Cardiovascular Surgeons (HCTSS), Hellenic Society of Radiation Oncology (HESRO), Hellenic Radiological Society, Hellenic Nurses Association, Hellenic Society of Thoracic and Cardiovascular Surgeons (HCTSS), Hellenic Psychological Society, Greek Patient Association, Hellenic Cancer Federation (ELLOK).
FairLife – Lung Cancer Care
FairLife- Lung Cancer Care is the only non-profit organization, exclusively dedicated to lung cancer in Greece. FairLife L.C.C.’s mission is to holistically support people impacted by lung cancer, aiming to improve their quality of life throughout their journey from diagnosis to treatment.
FairLife L.C.C. works:
– to raise public awareness about prevention and early diagnosis, so as to reduce mortality rates
– for the right to be informed about lung cancer
– to promote equal access to diagnostic methods, clinical trials and innovative treatments
– to indicate the need for psychological support for patients, their families and caregivers
– to eliminate lung cancer stigma related to smoking.
FairLife – Lung Cancer Care was founded in memory of Simon Bell, 57, who lost the battle with lung cancer in August 2020.
Communication Manager FairLife L.C.C.:
Nelly Kapsi
Napoleontos 18, 16675 Glyfada
Tel: 213 0165784
FairLine 111 57
WEBSITE | YOUTUBE | FACEBOOK | LIKEDIN | INSTAGRAM | TWITTER