The Here & Now campaign report:
An introduction

The Invisible Woman: Unveiling the impact of advanced breast cancer on women, families, society and the economy across Europe

The Here & Now report brings together new insights into ABC from the campaign‘s evidence base and existing research to create a thought provoking and informative report on the current status of advanced breast cancer in Europe. It also highlights the value of the 50+ woman‘s contribution to society, not explored on this scale before, underlining the need to ensure women living with ABC are supported. It provides recommendations on how we can act on these findings together and improve care and support for women with ABC across Europe.

”Advanced breast cancer is not just a personal tragedy - it is a social problem for the people concerned, their families and friends and the society as a whole. A majority of households depend on women aged 50+ for social and/or economic support. If they are unable to do some or all of this ’grey economy‘ work, then replacing their unpaid labour has an estimated replacement cost of around €8,767 per year for each woman whose labour is lost, a total of €876.5 billion for the 11 European countries considered in this report.“

- Professor Pamela Abbott, Report Author

Executive Summary

Advanced breast cancer (ABC) affects not only the person diagnosed and their friends and family, but the disease also has a wider social and economic impact. Advanced breast cancer is far from rare and largely affects women over 501. 30% of women with early breast cancer (EBC) go on to develop advanced disease1. Once you have ABC – the cancer has grown and spread beyond its original site – there is no cure. Success in cancer medicine mainly consists of succeeding in preventing the disease progressing to advance stage. While there have been advances in the treatment of ABC, no cure is within sight.

Medical treatment minimises the symptoms, prolongs life and improves the quality of that life. For a small minority it has become, to a limited degree, a manageable illness rather than something acute and life-threatening in the short or even the medium term. An accurate diagnosis of ABC, though, remains a death sentence, however long its execution may be suspended.

Many households depend on women aged 50+ for social and economic support. A significant proportion of 50+ women look after their own children or their grandchildren, or both. Many also care for elderly and disabled relatives and do voluntary work in the community. Virtually all of them do cooking and cleaning and undertake other household chores on a daily basis.

If they are unable to do some or all of this ’grey economy‘ work, then replacing their unpaid labour has an estimated replacement cost of around €8,767 per year for each woman, a total of €876.5 billion for the 11 European countries considered in this report. This does not take into account that 45 per cent of women aged 50-65 are in paid employment in Europe and make an important contribution to the formal economy.

For many women who are suffering from and coping with ABC, the outcome may be psychological, social and economic hardships. Support and guidance are offered, but they are not sufficient, according to our research, and patients and carers are often unable to get adequate information about ABC. They often feel depressed and worried, and live for the moment as they fear for the future. Many are forced to give up paid employment or reduce the hours that they work and take on less responsibility, at just the time when they face the additional costs of being ill. They are also less able to look after their families. Day-to-day living becomes a struggle to cope and survive.

The hopes for the immediate future include new treatments which need to be accompanied by improved clinical care, better and more tailored access to advice and information, and other measures to improve the quality of life for women with ABC and their families and friends.

Our hope is that this new body of evidence informs and inspires the following groups in order to bring about a positive change for women with ABC. In particular:

  • Healthcare professionals to understand they can do more for their patients with ABC
  • Payers, regulators and commissioners to improve their understanding of the ABC landscape and consider their responsibilities when making decisions about access to care
  • Patient support groups to build capabilities and feel empowered to further their support for women throughout their breast cancer journey
  • Health-aware general public to feel proud of this generation of women, recognising their value in society

And most important of all...

Women with ABC to feel that they are not alone and that together they can achieve more.

  1. Metastatic Breast Cancer Network. Most commonly used statistics for MBC [online available from: http://mbcn.org/education/category/most-commonly-used-statistics-for-mbc [Last accessed: October 2013].

”To make visible the needs, problems and solutions for our patients with metastatic breast cancer brings us closer towards achieving the ultimate goal: living - without suffering - with cancer“

- Michael Gnant, Professor of Surgery at Vienna Medical University, Austria