"Inequality is a choice"
So wrote the Nobel Prize-winning economist Joseph Stiglitz in his agenda-setting book The Great Divide: Unequal Societies and What We Can Do about Them. Stiglitz laid out how inequality is not inevitable; it is frequently the product of policy decisions we adopt. In that sense, some inequality is a choice we make (whether consciously or not) about the way we arrange, prioritize, and incentivize systems.
Inequality in cancer care is a global concern. The World Health Organization has been rightly encouraging greater international attention to the topic. A 2022 WHO report referenced that comprehensive cancer treatment is reportedly available in more than 90% of high-income countries but less than 15% of low-income countries, and that breast cancer survival five years after diagnosis now exceeds 80% in most high-income countries compared with 66% in India and just 40% in South Africa.
In this spirit, and with an eye to the European dimension of cancer inequalities, the European Cancer Organisation formed the Inequalities Network two years ago, bringing together healthcare professionals, patient representatives and other stakeholders from across public health, academia and other spheres.
From the outset, the Network highlighted problems and promoted solutions to inequalities across the cancer care continuum: prevention, detection, diagnosis, treatment, follow-up care, research, survivorship and quality of life. It highlighted inequalities between countries, including the “East-West Divide” in Europe, and within countries or regions based on race and ethnicity, sexual identity, gender, age or socioeconomic status and health literacy and patient education.
It can be done: beating inequalities in cancer care
An early focus of our Inequalities Network, which includes representatives from more than 40 organisations, was to help reach some consensus about inequalities. For this purpose, at the end of 2020, the Network held a public roundtable to hear from experts on the scale and nature of the problem in Europe and ways to address it. The result was the Network’s first Action Report: It Can Be Done — Beating Inequalities in Cancer Care. Recommendations included:
What gets measured gets done: deploying data to combat inequality
Data-driven approaches to combatting inequality have been an essential component of our Inequalities Network. In the run-up to the publication of the European Commission’s game changing Beating Cancer Plan, our Network promoted the need for “a European Cancer Dashboard.” This is a tool to measure the effectiveness of the suite of new EU cancer policies and should be used to help target policy actions against disparities in cancer care.
When Europe’s Beating Cancer Plan was published last February, we were therefore delighted to see a component of the plan dedicated to combatting cancer inequalities across Europe, including a commitment to a Cancer Inequalities Registry. Plans for this Registry highlight a wide range of disparities in areas such as prevention, detection and treatment. At completion, the Registry will also segment its findings according to socioeconomic factors to give clear insights about disparities within countries. The three principal organisations engaged in building the registry are:
Our network maintains regular dialogue with all three. We are grateful for their receptiveness to advice and proposals that come from our Network participants.
Cancer inequalities: a cause for international collaboration
Our Network has also benefitted greatly from the advice and experience from across the globe, including from the American Society of Clinical Oncology (ASCO), which has made reducing inequalities in cancer care a central theme of its operations. Europe still has much to do to match the data collection and analysis available in the United States, where clear outcome differences have been highlighted based on race and ethnicity.
Last year’s European Cancer Summit featured an excellent summation of work being conducted in New Zealand to help improve the participation and engagement of Māori communities, with lessons about how we each can do more to help combat inequalities by thinking carefully about the ways in which we communicate and appreciating and responding to different cultural norms. We understand, too, that the European Cancer Organisation’s HPV Action Network has had similar exchanges regarding the engagement of First Nation communities in Canada with cancer care delivery.
In the European context, we know there is much still be done to increase accessibility of, and engagement with, cancer care for the many groups in our societies who are too often excluded. Such groups include the Roma communities of Europe, undocumented migrants, the homeless, and those within institutions such as care facilities or prisons.
Combating inequalities via health literacy
From the outset, one solution that our Inequalities Network has advocated is improved health literacy on modifiable cancer risks, the warning signs of cancer, and early detection strategies. Health literacy is a tool we can use to reduce social inequality in cancer incidence and late detection, and to ensure patients and their families demand, and receive, better care. Health literacy can reduce unwarranted fatalism. It can also help to inoculate against the pernicious impact of rampant disinformation.
For this reason, we will publish this year a series of new consensus papers from our community outlining fresh opportunities for improving health literacy. We have been particularly pleased to work with the European Commission to provide detailed propositions of potential EU projects in this space.
In summary, the Inequalities Network of the European Cancer Organisation is well animated by the energy and enthusiasm of its participants to achieve much. There is no fatalism within our network. Inequality is a choice, and we are finding new ways to identify it — and to fight it.