With greater understanding of the disease and the rapid pace of advancements in available treatments, people living with breast cancer have an opportunity to better manage their disease over the long term. Recognizing that people are now living longer than ever, Sanofi launched When Cancer Grows Old (WCGO) in 2020 to inspire advocates, healthcare professionals and policymakers to identify solutions needed to support older people with cancer, and their families, in unprecedented ways.
The WCGO Global Contributions Initiative was spearheaded in 2020 to provide funding to local organizations focused on cancer and aging. Now in the second year of our initiative, we expanded our efforts to support approximately 50 organizations globally that are doing important work to drive solutions that address the unique challenges of cancer and aging in their communities.
One organization we are proud to support is the Hellenic Association of Women with Breast Cancer (“Alma Zois”). Alma Zois, a non-profit association founded in Greece in 1988 by a group of women who personally experienced breast cancer, is focused on providing people living with breast cancer in Greece full psychosocial support and information on all aspects concerning their health, career and life. We recently spoke with Paraskevi Mihalopoulou, President of Alma Zois, about how her organization is working with older people living with breast cancer in Greece to help address their needs and improve the patient journey.
1. How does the work of Alma Zois support older people with breast cancer and medical professionals in Greece?
Cancer has a significant effect on the elderly. More than half of new cancer diagnoses are in people over 651 and it is one of the leading causes of death for people between the ages of 65 and 74.2 Despite the prevalence of this disease, knowledge and research into the challenges of cancer in older populations remain limited.3
Higher life expectancy and increasing survival rates are allowing us to more actively listen and take care of the needs and preferences of elderly people with cancer. For example, older individuals may need the support of a caregiver or aide during their journey through the Greek National Health System, especially if they have to travel from their home to a different city to receive the care they need, or even stay in a different city during the duration of their therapy.
In recent years, Alma Zois has focused on collecting information from the local breast cancer community about their unique needs. This research showed that women aged 65 years and older were concerned about being forgotten and left out of conversations about cancer care. As a result, Alma Zois created a workshop for people living with breast cancer, which includes older patients to discuss their unique needs and obstacles they face when undergoing treatment and post-treatment care and survivorship. The insights gathered will help Alma Zois determine what actions need to be taken in order to provide the best support for individuals with breast cancer who are diagnosed at a later age in life. The response to the workshop has been overwhelmingly positive, with the older individuals noting how important this has been in sharing their perspectives and ensuring their needs are heard by the broader oncology community.
2. What challenges do oncology patient advocacy groups face in Greece? Can you share an example of this challenge?
One of the biggest challenges patient advocacy groups face in Greece is that the Greek National Health System does not always consider a person’s individual needs or unique patient journey when making decisions about treatment and care.
We need stronger collaboration and partnership between stakeholders to make positive changes and drive evidence-based improvements in care. At the same time, we need to recognize and promote the role of patient advocates for their direct work with decision-making bodies, which has already started to happen with some national government committees.
There is also a growing need for greater patient education and training, while also ensuring that patient advocacy groups can share their perspectives and understanding of patient needs to help inform decision making at the national level. I cannot stress enough the importance of listening to patients’ views on issues and involving them in decisions that affect them directly. A great example of this is that, after many years of fighting for reimbursement of digital mammography from the National Insurance, it was finally put into place in 2017. This could only have been achieved by patients, institutions and groups such as Alma Zois joining forces to advocate for change.
3. What are some psychosocial/emotional impacts currently being faced by people with breast cancer and their families in Greece?
COVID-19, and the multiple lockdowns that everyone had to face, have left patients with increased anxiety, fear and worry. An internal study by Alma Zois on the impact of COVID-19 on these individuals provided startling results. For example, half of the patients who responded said that COVID-19 had a serious impact on their mood, and 41% shared that they are concerned about the impact of the pandemic on their mental health. The burden of the diagnosis and therapies, combined with the need for protection from COVID-19, have highlighted the need to address mental health issues, loneliness and anxiety in addition to traditional cancer care.
4. What is Alma Zois doing to address the unmet needs and unique challenges of patients with breast cancer in Greece?
Alma Zois is a member of multiple Greek and European patient advocacy groups dealing with breast cancer, and we participate in congresses to learn about the latest research and news. For better information exchange with the breast cancer community, we maintain open lines of communication with the more than 2,500 members of our organization. This gives us a greater understanding of the challenges and opportunities faced by this community, and clear direction on what we need to do.
Through annual workshops, we are able to highlight the unmet needs of people living with cancer to be addressed, and Alma Zois organizes its annual planning according to these needs. Taking advantage of the benefits of technology, we have created a mobile app to reach individuals with metastatic breast cancer who cannot attend face-to-face meetings. We also organize webinars and tele-counseling opportunities and operate a helpline that provides individual and group psychotherapy to individuals, as well as legal counseling.
We are uniquely focused on addressing the needs of people over age 65, which will take on greater prominence in the coming years.
Learn more about the When Cancer Grows Old program
Collaborating with organizations to raise awareness and inform discussions on age-inclusive cancer programs
Supporting organizations working on solutions that improve the cancer patient journey
- Globocan. Global Cancer Observatory Cancer Tomorrow. World Health Organization International Agency for Research on Cancer Website. 2018. http://gco.iarc.fr/tomorrow/graphic-line?type=0&population=900&mode=population&sex=0&cancer=39&age_group=65%2B&apc_male=0&apc_female=0. Accessed on 26 Nov, 2019.
- United Nations, Department of Economic and Social Affairs, Population Division (2015). World Population Ageing 2015 (ST/ESA/SER.A/390) https://www.un.org/en/development/desa/population/publications/pdf/ageing/WPA2015_Report.pdf
- Hurria, A., Levit, L.A., Dale, W., Mohile, S.G., Muss, H.B., Fehrenbacher, L., Magnuson, A., Lichtman, S.M., Bruinooge, S.S., Soto-Perez-de-Celis, E. and Tew, W.P., 2015. Improving the evidence base for treating older adults with cancer: American Society of Clinical Oncology statement. J Clin Oncol, 33(32), pp.3826-3833. https://pubmed.ncbi.nlm.nih.gov/26195697/