Advocacy Leader Conference Press Release 2012

Advocacy Leader Conference Press Release
News release 22 September 2012


EUROPA DONNA – The European Breast Cancer Coalition’s Breast Cancer Advocacy Leader Conference brought together more than 50 national representatives and delegates from 32 of the Coalition’s 46 member countries in Milan on 22 September. In workshops, participants shared ideas on advocating for the needs of women with metastatic breast cancer, understanding breast cancer research, managing and organising EUROPA DONNA fora, as well as key strategic approaches to ensure the continued success and sustainability of the Coalition’s advocacy activities Europe-wide.

Financial sustainability − this time of current health care systems − was one of the main themes of the keynote lecture by Dr. Panos Kanavos of the London School of Economics. “You need to be prepared to advocate for specific needs. It is going to be impossible in the future to fund everything in a sustainable and comprehensive way. The age of universal coverage and access is, in a sense, all but over,” Dr. Kanavos said in a lively presentation that put health care policy into the context of today’s economic situation. He described the role of health technology assessment (HTA), which seeks to assess the degree of clinical and cost-effectiveness of a new technology, such as a diagnostic method or a new drug, in comparison to the current standard of care. He added that patient groups must understand HTA and its implications for health care policy so that they can advocate for health systems to enable selective coverage of new technologies. He encouraged patient groups to pool resources, to identify the health technologies required and to make factual submissions to HTA bodies and regulators. “You are not only cancer patients advocating for a particular type of cancer; you are individuals with an important opinion about where the health care system is going in the next 5 to 10 or 20 years,” he said.

In her introduction, Susan Knox, Executive Director of EUROPA DONNA, said, “Health technology assessment is a very important topic for advocacy today, particularly in view of the difficult situations that many of our member countries are facing. Advocates will need to understand more about the methodologies that are used by governments across Europe to determine whether they or members of the public receive treatment and pharmaceutical products.”

In a subsequent presentation, Ms. Knox went on to describe the key components of establishing and running non-profit organisations, particularly EUROPA DONNA fora. She highlighted the need for an annual work plan to ensure that the activities are addressing the needs of the target population, as well as outside auditing and increased transparency and accountability.

Prof. Bettina Borisch, EUROPA DONNA Past President and professor at the University of Geneva, Switzerland, gave an informative training session on tips for understanding breast cancer research. This was based on EUROPA DONNA’s new booklet The Advocate’s Guide to Understanding Breast Cancer Research, which was released at the conference.

Advocates had numerous opportunities to share ideas and work with representatives of countries with similar concerns in a variety of workshops on the following topics:

  • The current situation of EUROPA DONNA fora, issues to resolve and barriers to overcome
  • How to provide support and advocacy for metastatic breast cancer patients locally and nationally
  • Understanding the main concepts of reading breast cancer research
  • Strengths and weaknesses of the Coalition as a whole and areas for future development

“This Breast Cancer Advocacy Leader Conference dedicated to ‘Building our Organisations for the Future’ has provided a prime opportunity for our national representatives and delegates to work together and share ideas so that they can better advocate for optimum breast care services in their countries. Feedback from our members on our Coalition as a whole will also help to make us stronger and ready to face the challenges of the future,” said Elizabeth Bergsten Nordström, President of EUROPA DONNA.


EUROPA DONNA – The European Breast Cancer Coalition – is an independent, non-profit organisation whose members are affiliated groups from countries throughout Europe. EUROPA DONNA works to raise public awareness of breast cancer and to mobilise the support of European women in pressing for improved breast cancer education, appropriate screening, optimal treatment and care and increased funding for research. Member countries currently number 46.

Contact information:
EUROPA DONNA – The European Breast Cancer Coalition
Piazza Amendola, 3
20149 Milan
Tel: +39 02 3659 2280
Fax: +39 02 3659 2284

The views expressed herein do not necessarily reflect those of EUROPA DONNA.