LEBEN WIE ZUVOR und EUROPA DONNA Brustkrebsorganisationen und gender health

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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

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Patients organisations (Breast cancer
organisations
Gender health
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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)
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Patients organisations

• Poor and have little independent funding
• Depend on sponsors (pharmaceutical companies)
• International federations of patients
  organisations are more likely to be a political
  partner
• Society should enable patients voices to be
  heard

Herxheimer, BMJ 2003 (326), Mosconi, BMJ 2003
(327)
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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

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Types of breast cancer activities
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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

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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

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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

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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

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EUROPA DONNA (ED) (I)the European Breast Cancer
Coalition

• Defence of womans 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

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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

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Gender health
Gender disease
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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

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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

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Comparison with anglo-american websites breast
cancer associations

• Gender aspects are rarely mentioned
• Except for the parts dealing with male breast
  cancer (ex Komens Race for cure)
• Some websites have aggressive
  data-presentations, but not including gender
  (example A)
• Some websites contain political information
  (example B)

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