“LEBEN WIE ZUVOR” und “EUROPA DONNA” Brustkrebsorganisationen und gender health

1. “LEBEN WIE ZUVOR” und “EUROPA DONNA” Brustkrebsorganisationen und gender health Prof. Bettina Borisch Department de pathologie, Université de Genève Dr. h.c. Susi Gaillard “Leben wie zuvor”, Reinach

2. Patients organisations (Breast cancer organisations Gender health

3. Patients’ organisation Needs help with: • Project funding • Information about treatments and diagnosis • Lobbying for resources to help people with the disease or problem • Business know how • Core funding Herxheimer, BMJ 2003 (326), Mosconi, BMJ 2003 (327)

4. Patients’ organisations • Poor and have little independent funding • Depend on sponsors (pharmaceutical companies) • International federations of patient’s organisations are more likely to be a political partner • Society should enable patient’s voices to be heard Herxheimer, BMJ 2003 (326), Mosconi, BMJ 2003 (327)

5. Breast cancer patients organisations Different types exist: • Self-help groups • Lobbying groups • Advocacy/lobbying groups • Mixed self-help and advocacy/lobbying • Clinical trials associated groups • Subgroup oriented breast cancer organisations, i.e. lesbian/WPW, ethnic groups, age groups • Research fund raising groups • High variability as to size and “importance”

6. Types of breast cancer activities

7. Internet search • 69 (55) websites Anglo-American breast cancer patients organisations ( + 9 male breast cancer organisations) • 16 (10) German speaking websites with breast cancer patients organisations • 2 breast cancer patients organisations in Switzerland: “LEBEN WIE ZUVOR” and “EUROPA DONNA SWITZERLAND”

8. CH – breast cancer patients organisations • “LEBEN WIE ZUVOR” – Deutschschweiz “Vivre comme avant” unabhängig in einigen Kantonen der Welschscheiz vivere come prima – Tessin Started as a self-help group • EUROPA DONNA SCHWEIZ Lobbying and Advocacy organisation

9. LEBEN WIE ZUVOR (LWZ I) • 1980 founded as an self-help group similar to “Reach to recovery”(USA) and “Vivre comme avant” (France) • 1989/90 formally established as an association with a “Geschäftsstelle” • Today 68 groups all over Switzerland, promoting information and providing help for women recently operated for breast cancer

10. LEBEN WIE ZUVOR (LWZ II) • Visits from former patients to bedside, before, during and after the acute phase of treatment • Creation of discussion groups of patients which help exchange information and psychological comfort • Information and teaching of visitors • Organization of meetings including patients and medical/scientific participants

11. EUROPA DONNA (ED) (I)the European Breast Cancer Coalition • Defence of woman’s right to optimal treatment, timely screening programs, appropriate medical practice and supportive care (10 goals of ED) • Activities mainly devoted to education, information and lobbying • Lobbying via involving institutions, i.e. European Parliamentary group on Breast Cancer (EPGBC): June 2003 European resolution on breast cancer

12. EUROPA DONNA (ED)(II)the European Breast Cancer Coalition • Fora in 32 European countries • Not intended to replace existing organizations • Provides a focus of exchange • Serves as moving force for combined actions • Promotes public awareness of breast cancer, research and good clinical practice

13. Gender health Gender disease

14. Male breast cancer • The best equivalent gender disease for breast cancer is probably prostate cancer • Male breast cancer is an inverse gender problem • Man having a female disease • Example of gender disease management • As to gender health in both cancers ? • How do patients experience cancer in terms of gender and how do medical institutions contribute to that experience as they too gender their practice

15. Gender aspect in LWZ and ED-CH www. • Texts of the respective websites: • No specific information as to the frequency of breast cancer in males/females • Medical information: derived from publications of the medical community • Possibilities of misbalance in research efforts on breast cancer not mentioned • Women's role in society not addressed

16. Comparison with anglo-american websites breast cancer associations • Gender aspects are rarely mentioned • Except for the parts dealing with male breast cancer (ex; Komen’s Race for cure) • Some websites have “aggressive” data-presentations, but not including gender (example A) • Some websites contain “political” information (example B)

17. Example A WW1 WW2 Korea Vietnam all 20ct wars 1 decade breast

18. Example B Our Mission Defining breast cancer as a political issue, the Massachusetts Breast Cancer Coalition challenges all obstacles to the eradication of this disease. The MBCC has always viewed breast cancer as a political disease and we feel even stronger about that view today as we engage in discussions and actions related to environmental research into the causes of breast cancer, access to health care, and the misleading advertising of prescription drugs.

19. Advocacy and gender • Is it too much in one single message? • The roots of the American breast cancer movement: feminism and AIDS campaigns • Gender (and other social characteristics) are neglected in advocacy • Yet gender emerged as a hidden variable which deserves further exploration Walmsley J , 2003; Moyniham C 2002

20. Questions • Is the “neutral” aspect in terms of gender of the investigated websites a consequence of • A) relation to sponsors • B) relation to medical community • C) consequence of socio-cultural training/ surrounding • Impact of gender on advocacy organisations ?