A Study of Nursing Provision and Models of Care for People Diagnosed and Living with Metastatic Breast Cancer in Britain: What are the Implications for the Practice? and What Role Does Patient Advocacy Play?

The Breast ◽  
2017 ◽  
Vol 36 ◽  
pp. S33
Author(s):  
Catherine Priestley
2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 177s-177s
Author(s):  
M.L. Bello

Background and context: In Argentina, every year 19,000 new breast cancer cases are diagnosed, and 30% of those cases will advance to a metastatic stage. In fact, breast cancer is the first cause of female death by tumors in Argentina. Previously, BC awareness campaigns developed by local NGOs, medical societies and/or government authorities focused their efforts in early diagnosis, and there weren't initiatives raising the awareness of those women suffering from advanced or metastatic BC. In fact, a regional survey that included Argentina reported that only 50% of respondents knew anything about mBC. Particularly in Argentina, 76% of adults considered that media and key influencers were not paying enough attention to the mBC burden of disease. Furthermore, every time mBC was mentioned, it was with a negative connotation, more of a “sentence of death” than a positive message. Aim: To raise the voice of Argentinian metastatic breast cancer patients to ensure that their situation and needs are known and addressed by the general public, media, and government authorities. Strategy/Tactics: In 2016, Pfizer along with four cancer patient advocacy organizations (MACMA, ACIAPO, SOSTEN and ACILCO) worked together to change that situation. Eleven women with mBC shared their testimonies through in-depth interviews with a message full of hope and positive feelings. These women's experience inevitably led them to take a different view at life. For them, words changed their meaning following diagnosis, when their life changed. With admirable simplicity and integrity, they shared these meanings that invited us all to appreciate life differently. These testimonies were included in a dictionary called Palabra de Mujer (Woman's Voice) where powerful words as life, love, friendship, future, among others were redefined while compared with the literature academy formal meaning. These women and the NGOs participated in a media campaign that included a press-conference, live interviews for TV shows, interviews for most important magazines and newspapers and participation at local “Grammys”. To gain a national reach, the campaign had the support of advertising and a Web site where video testimonies could be found and the dictionary downloaded for free. The dictionary was also distributed to patients at different levels: patient advocacy groups, public hospitals, payers and physicians' offices. Outcomes: This campaign had a wide stakeholder reach, with an impact of +79 million impressions, 5000 dictionaries distributed and more than 50,000 unique visits to the landing page ( www.palabrademujer.com.ar ). Moreover, the city of Buenos Aires declared Palabra de Mujer of sanitary and social interest, recognizing the initiative at the legislature. Additionally, the participant NGOs are still asking for more and more dictionaries as, any time they give one of them to a mBC patient, feedback is powerful and full of hope.


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