Better Policy for Metastatic Cancer Patients Workshop
On 8 November 2016, a wide range of metastatic cancer stakeholders met in the European Parliament to discuss the needs of people with metastatic cancer and identify specific actions for improvement. The workshop was hosted by MEP Deirdre Clune (EPP, Ireland) and supported by MEP Karin Kadenbach (S&D, Austria). The meeting was organised with support from Pfizer.
People with metastatic cancer and caregivers shared their experiences of living with the disease, the struggle of being diagnosed and adapting to challenges in the workplace. Data collection and assessment was identified as a necessary step to work towards policies that better meet the needs of people with metastatic cancer. From the caregiver’s perspective, there is a lack of tailored information on guidance and support.
The meeting produced two informal recommendations:
1. The European Union should support the development of data on the number of people with metastatic cancer and their participation in the workforce. In the longer term, comprehensive and compatible cancer registries are needed across Europe.
2. Information on metastatic cancer tailored for caregivers should be developed. Caregivers often serve as a source of information for the patient, and represent the interests of the patient at home and more widely.
Metastatic cancer is cancer that has spread from its point of origin to other parts of the body, and currently there is no cure. Despite substantial variation between and within tumour types, advances in the types of treatment and care mean people with metastatic cancer may live for a substantial number of years after diagnosis. For example, half of all people with metastatic breast cancer can expect to live between two and four years (Mosher et al, 2013).
First panel: Setting the scene on metastatic cancer
During the first panel, metastatic cancer patients Suzanne Leempoels and Christine Stylianidis Conn shared their personal account of living with the disease.
Suzanne Leempoels shared the professional and financial challenges she experienced in Belgium after being diagnosed with early breast cancer, especially the limited social protection for patients with an ‘independent’ (freelance) professional status. Cancer patients with ‘independent’ status are still largely under-protected compared to employees; in Belgium, transitional changes to the tax system for independents while Suzanne was dealing with the disease meant that she paid excess taxes that could not be recovered. In this instance, her metastatic cancer diagnosis in March 2013 “came as a kind of relief as it temporarily solved my return to work problem”.
Suzanne also emphasised the importance of self-care in dealing with metastatic cancer – such as exercise, and understanding the benefits of good nutrition and daily lifestyle choices. She recommended including self-care education as part of treatment for every metastatic cancer, as it will help people with cancer enjoy a better quality of life.
Although diagnosed with metastatic breast cancer, her specific condition meant that her oncologist was able to treat her with a curative approach. This is rare in metastatic breast cancer. Although Suzanne could not say she is ‘cured’ of metastatic cancer, she currently shows no evidence of the disease. This led to an “identity crisis”: was she a breast cancer survivor, or a metastatic breast cancer patient? This issue was resolved for her when she learned that the rehabilitation programme she had used as an early breast cancer patient excluded her due to her metastatic diagnosis.
Suzanne also highlighted the challenge of receiving appropriate social services support for formal care during illness. The questionnaires used to assess her capabilities were based on individual points in time; this is not adapted to the reality of chemotherapy treatment, which includes periods of substantial side effects.
Despite the many challenges she has faced, she highlighted the potential for healthcare innovation in prolonging the lives of people with metastatic cancer, therefore changing the stigma associated with a terminal diagnosis into that of a manageable chronic condition.
The main recommendation she delivered was the need for data collection. “It’s time to catch up and use the underexploited potential of data science to speed up metastatic cancer research and new treatments”. From a patient perspective, data collection and analysis is the first step towards improving quality of life, achieving longer periods without disease progression and eventually the prospect of disease-free survivorship.
Christine Stylianidis Conn (Tina), a founding member of the Greek patient organisation Alma Zois Thessaloniki and a representative of the European Cancer Patient Coalition, shared her experience of living with metastatic cancer. She worked in a multinational company when she was first diagnosed with breast cancer in 2006. Following her return to work, the company underwent a restructure and she lost her job. Faced with the challenge of finding work as a cancer survivor in her mid-40s in Greece, Tina began a new career as an English teacher. In parallel, she experienced extensive bureaucratic barriers to gaining a disability pension.
In 2015, Tina was diagnosed with metastatic breast cancer. Her condition allowed her to return to work and resume life where it had stopped, “Only now I had a permanent uninvited companion: metastatic breast cancer”. During her initial diagnosis, she felt surrounded by friends and people wishing her well, but after her metastatic cancer diagnosis many people did not know how to react: “Society views metastatic cancer patients either as on the verge of dying or cured, while patients consider themselves as chronic disease patients.” She also explained the isolation she experienced due to the gaps in the local patient association, “as they concentrated more on early breast cancer and weren’t able to provide support [to metastatic cancer patients] at the time.” Like Suzanne, Christine shared her struggle with the Greek social security system and the high individual financial burdens experienced by people with cancer, concluding that “Metastatic cancer care triggers outstanding and unparalleled costs, which patients simply cannot afford”. These issues need to be addressed through measures such as tax cuts and relief on social insurance payments for people with metastatic cancer. She also noted the need for better provision of formal care and better connections with informal caregivers, as well as the valuable role that other psychological supports (like the arts) and encouragement can play for people with metastatic cancer.
“Society views metastatic cancer patients either as on the verge of dying or cured, while patients consider themselves as chronic disease patients. Metastatic cancer care triggers outstanding and unparalleled costs, which patients simply cannot afford.”
Christine Stylianidis Conn, European Cancer Patient Coalition
As a representative of the European Cancer Patient Coalition, she suggested some actions that could improve the quality of life of people with metastatic cancer, particularly reduced bureaucracy and improved access to information, specialised doctors, psychological support and growing community support services. New treatments for metastatic cancer are also needed, and must be safe, effective and affordable. In conclusion, while confirming the European Cancer Patient Coalition’s commitment to continue working on better policies for people with metastatic cancer, Tina and the European Cancer Patient Coalition called for a European assessment of the status of people with metastatic cancer both in the workplace and in the social system.
Karen Benn, Deputy CEO and Head of Public Affairs of Europa Donna, the European Breast Cancer Coalition, presented their ongoing work and priorities in the area of metastatic breast cancer. Karen Benn presented Europa Donna’s ongoing advocacy work for improving the quality of life and services for people with metastatic breast cancer. Europa Donna, the European Breast Cancer Coalition, has been particularly active in metastatic breast cancer over the last 10 years, running workshops at its conferences for its members with metastatic breast cancer and running surveys on metastatic breast cancer in its member countries to see which are the areas of key concern to women living with metastatic breast cancer. Europa Donna has been advocating for additional employment and financial protection and improved support for formal and informal caregivers in the system. Europa Donna also raises awareness of the specific needs of people with metastatic breast cancer in terms of treatment, access to care coordinated by a specialist breast unit, information, counselling, social services and the inclusion of the rights and needs for specific information for those with metastatic breast cancer in national and EU guidelines Europa Donna strongly supported the adoption of the EU Written Declaration on the fight against breast cancer in the European Union in July 2015, which called for improved access for people with metastatic breast cancer to Specialised Breast Units that could coordinate and support the ongoing care and psychosocial service needs of patients. She also noted Europa Donna’s extensive engagement with the European Commission Initiative on Breast Cancer, ECIBC.
Karen presented the results of a 2014 survey that identified the main issues for people with metastatic breast cancer, which included: insufficient doctor-patient communications, lack of access to treatments, lack of multi- disciplinary teams, unavailability of psychosocial support, financial aid and support with day-to-day issues, such as employment and insurance. Overall, Europa Donna identified the lack of data on people with metastatic breast cancer as a substantial issue, emphasizing the need for cancer registries – which are the most informative source of population based data – to capture information on the number of people living with metastatic disease, “We just don’t know the number of people who are living with metastatic breast cancer”: estimates of 20-30% are based on clinical observation rather than population-level data. A first step could be to model actual figures.
Second panel – Metastatic cancer in the workplace
Isabelle Lebrocquy, a colon cancer survivor and a founder of oPuce, a social enterprise that helps cancer survivors finding jobs, presented her organisation’s work. According to oPuce, stigma and social legislation are the two underlying causes of long-term unemployment of people with metastatic cancer, further lowering their standards of living. oPuce calls for data collection, also on the workplace situation of people with metastatic cancer, because “with no data, there is no problem”.
As part of its activities in 2013, oPuce produced a survey to understand the severity of the problem experienced in workplace by all types of cancer patients in the Netherlands. This survey found that 25% of 1,000 respondents had lost their job after being diagnosed and 61% stayed unemployed. With these results, oPuce asked the Dutch Parliament to help in creating an Action Plan for ‘Cancer & Work’. The Netherlands is now one of the first countries in Europe addressing the burdens of ‘Cancer & Work’. Looking ahead, oPuce recommended that the EU collect data on working (metastatic) cancer patients by starting a harmonised EU cancer registry. This registry should not only focus on medical aspects, but also on quality of life, work situation, redundancy, unemployment and pauperisation after cancer.
Petra Hoogendoorn is a social entrepreneur in quality of life e-health for cancer patients and carers; she is also head of operations at the Netherlands Cancer Institute. Petra’s husband, Richard, was diagnosed with brain cancer in 2009, and he died in 2012. Petra shared her experience of caring for him. After his diagnosis, the company he worked for went through a merger, and enormous pressure was placed on him, having to perform four assessments to qualify for his job six months before he died, and due to legislation that calls for a medical review after two years of not being able to work full time. “Richard wanted to keep his job in order to maintain his stable income and pension rights for his family, in addition to his social interactions.” If Richard had lost his job before his death, the family pension would only have been one third of its actual level. Petra therefore identified limited employment protection and lack of working flexibility as two key issues that should be addressed for people with metastatic cancer.
She also highlighted the burden of being a caregiver in relation to her own working situation, having recently started with a new employer on a temporary contract. “Who would want to hire a brain tumour patient or a person who is primary caregiver to a (chronically or) terminally ill husband?”
Petra raised the importance of helping informal caregivers to remain at work, since social interaction and stable financial income are main causes in caregiver burnout. Petra noted studies showing that the early introduction of palliative care4 (physical, psychosocial and spiritual) for metastatic patients can improve the quality of life of both patients and caregivers. Assessing coping strategies, as is done in early palliative care, can help prevent problems. Policy changes could considerably speed up availability of and access to early palliative care for metastatic patients and caregivers.
During discussion, Ian Banks, of the European Cancer Organisation and the European Men’s Health Forum, noted evidence showing that people who experienced unemployment had higher rates of mortality. Therefore, addressing the employment situation of caregivers and patients also impacts the health and quality of life for both. Karen Benn stressed the importance of flexibility at work and protection of the right to work for all patients with degenerative conditions, including cancer patients, and referred to France as an example of a country that appears to protect these rights. Camille Bullot of the European Patients Forum also noted examples of other patient organisations that have produced advice for employers on how to deal with employee conditions, such as the European Multiple Sclerosis Platform.
During this session, speakers and participants raised challenges experienced by people with metastatic cancer and caregivers in the workplace and stressed the need for better protection and flexibility in social and employment policy.
During discussion, there was consensus on the urgent need to develop data on the participation of people with metastatic cancer in the workplace, ideally comparable across EU countries. A pilot project in one area, such as metastatic breast cancer, could then form the basis for more systematic work across the spectrum of tumour types. In the longer term, it is critical to push for the implementation of comprehensive and compatible cancer registries.
Third panel – Metastatic cancer and carers
Stecy Yghemonos, Executive Director of Eurocarers, the European network working with and for informal carers, presented key figures on the challenges faced by carers across Europe. Carers are people who provide (usually unpaid) care to a person with a chronic disease, a disability or any other long-lasting care needs, outside of a formal or professional context. Their number is evaluated at 100 million at least, i.e. 20% of the EU population and they currently provide 80% of care. Eurocarers aims to raise awareness of the needs of informal carers and the savings that these people’s largely unrecognised contribution allow for social security systems. Stecy highlighted the recent working document Long-term care in ageing societies – Challenges and policy options released by the European Commission’s Directorate General for Economic and Financial Affairs (DG ECFIN). The document outlines the economic value of unpaid family care as a percentage of the overall costs of long-term care in EU Member States, ranging from 50% to 90% of formal care budgets (Triantafillou J. et al, 2010). With this data, Stecy stressed that “would informal carers stop caring tomorrow, European health and social systems would simply collapse.”
Issues affecting informal carers include the lack of a standard definition to identify them (impacting data and thus policy), the struggle with balancing work and personal life, as well as the higher prevalence of physical and mental health, poverty and social exclusion among informal carers. These issues cumulatively exacerbate the challenges faced by Europe’s ageing population and generate hidden opportunity costs that decision-makers too often tend to overlook.
Even when patients may have access to adequate information regarding their condition and the related social support available to them, carers are often left out of the care pathway and are still not considered as partners in care. The need for adapted information aimed at carers is nevertheless critical to ensure they can provide quality care and information to the patient while preserving an active and healthy life. Given the lack of a one-stop shop where carers would be able to access the information that is relevant to them, Eurocarers has been working on an online information portal called InformCare. This portal seeks to provide carers with practical information and advice about caregiving activities as well as about their needs and rights, in 23 languages. Nevertheless, financial sustainability of the portal has proved a challenge, which raises questions about public responsibilities regarding the provision of such essential information to informal carers throughout the EU.
Ian Banks also noted the important role of caregivers, suggesting that they should be part of the multi- disciplinary care team. He noted that a substantial proportion of caregivers for people with metastatic breast cancer are men, yet most breast cancer information is (understandably) produced for women. He stressed that men and women often respond differently to health information and that adapted information would help better meet their needs.
During the discussion, there was consensus on the need to address the challenges faced by informal caregivers. It was proposed that information could be developed that is specific to caregivers of women with metastatic breast cancer, and include information adapted to male carers. This is a specific and achievable goal that could provide the template for other tumour types or for caregivers more generally.
MEP Clune acted as the workshop’s host, highlighting society’s limited understanding of metastatic cancer. MEP Clune stressed the immediate need for a thorough analysis of the situation as life expectancy rates continue to rises in some tumour types.
“Together, we – patients, patient advocates, healthcare professionals, politicians and policy makers – have the capacity and legitimacy to make policy suggestions.”
Deirdre Clune, MEP
The workshop concluded with an intervention from MEP Karin Kadenbach who gave guidance and support to move forward with the workshop recommendations. She discussed the lessons learned surrounding the low level of public understanding of metastatic cancer globally and the associated stigma. She went on to discuss the importance of flexibility for patients (and caregivers) in the workplace, as they adjust to their new routines and limitations to their daily work schedule; stressing the need to work towards making sure that metastatic patients have the opportunity to stay or to return the workforce. MEP Kadenbach referenced the European Parliament’s tools that could be used to collect necessary data, and affirmed her support of a Pilot Project to support research efforts that would provide comparable data on the number of people with metastatic cancer and their level of participation in the workplace: “Let’s look into it together.”
“We need to address the general conditions of metastatic cancer patients in the workplace, but yet we do not understand the dimensions of the problem.”
Karin Kadenbach, MEP