Taking It to the Streets: My Journey · powerful few.” “A public health advocate needs to be a...
Transcript of Taking It to the Streets: My Journey · powerful few.” “A public health advocate needs to be a...
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Taking It to the Streets: Breast Cancer Advocacy in Your Community… and Beyond
Plenary Session Two
Bellevue, WA � February 23, 2013
SSusan Matsuko Shinagawa Cancer Thriver & Community Health Activist
Co-Founder & Past Chair, Asian & Pacific Islander National Cancer Survivors Network Past Chair, Intercultural Cancer Council
Internal Advisory Committee Member & Chair, Community Liaison Committee, SDSU/UCSD Cancer Center Comprehensive Partnership
MMy Journey
Cancer Patient/Survivor
Cancer Thriver/Advocate
Community Health Activist
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Speaking Truth to Power
“The journey toward advocacy is often triggered by tragic experience. Health problems force us to quickly understand that our health is both personal and political.” “Advocates tend to work outside of the system. …(they) have the freedom to agitate for the advancement of agendas outside of the interests of a powerful few.” “A public health advocate needs to be a good listener and messenger. She delivers the message from the people to the institutions of power in a way they can hear.”
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First Three Steps on the road to
Becoming a Cancer Survivor/Advocate
MMy Journey from Cancer Patient & Survivor to Cancer Thriver & Advocate
Step 1: Sharing my personal cancer story Individuals and communities:
Women (in general) and young women (specifically)
Asian and Pacific Islander women
Asian and Pacific Islander communities
Other women and communities of color
Professional Associations & Service Clubs University of California, San Diego Women’s Caucus
UCSD Pan Asian Staff Association
Staff Subcommittee of the UCSD Chancellor's Affirmative
Action Advisory Committee
San Diego Junior League
Women’s Clubs, Kiwanis Club, Soroptimists International
Local university sororities
Local high school Key Clubs
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Local, Regional and National Community-Based Health & Social Justice Organizations
Union of Pan Asian Communities, San Diego
NAACP, San Diego Chapter
Health Education Council, Sacramento, CA
Papa Ola Lōkahi, Native Hawaiian
Association of Asian Pacific Community Health
Organizations Intercultural Cancer Council National Hispanic Medical Association Asian & Pacific Islander American Health Forum Summit Health Institute for Research & Education, Inc. Out of Many, One
SStep 1 (cont.): Sharing my personal cancer story
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and advocating on behalf of communities of color, poverty and oppression with:
National / State / Regional / Local mainstream cancer service and advocacy organizations
American Cancer Society
Susan G. Komen Breast Cancer Foundation
National Coalition for Cancer Survivorship
LIVESTRONG (the Lance Armstrong Foundation)
The Breast Cancer Fund
California Alliance of Breast Cancer Organizations
Breast Cancer Action
and many others
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Step 1 (cont.): Sharing my personal cancer story,
Those who can influence and implement necessary changes to the system
Cancer clinicians (e.g., oncologists, family
physicians, nurses, social workers, psychologists,
and other healthcare providers)
Cancer researchers (basic/laboratory researchers,
clinical researchers, behavioral researchers, etc.)
Funders of cancer education and support programs
Funders of cancer research programs
Legislators and health policy makers (city, county,
state, national, agency directors and administrators,
etc)
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SStep 1 (cont.)
Sharing my personal cancer story with:
SStep 2: Listening to & learning from others (very important!)
Cancer Survivors Breast cancer survivors
Survivors of other cancer types and sites
Survivors from diverse communities
(based upon race, ethnicity, age, gender, sexual orientation,
educational attainment, ability/disability, geographic/regional/
neighborhood residency, nativity, immigrant/ refugee, language
proficiency, socioeconomic status, religion, cultural affiliation)
Male and Female
Family members Caregivers Survivors of cancer patients who have passed on (families, friends, colleagues, caregivers, communities, etc.)
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My Journey from Cancer Patient & Survivor to Cancer Thriver & Advocate
Those who work with or on behalf of cancer patients/survivors and their families:
Community leaders and gate keepers
Cancer health service agencies and advocacy
organizations
Administrators / Managers / Board Members
Staff who work directly with cancer patients/survivors in
communities
Community volunteers and survivor/advocates
Health care entities (hospitals, clinics, offices),
including their providers, administrators and staff
Biomedical and behavioral cancer research
entities, research investigators and staff
SStep 2 (cont.) : Listening to & learning from
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SStep 3: Working together to provide for the needs of cancer patients and families, and fill gaps in care and services
Help to educate and bring cancer awareness to members of
my own and other communities
Advocate on behalf of all underserved communities
Encourage survivors and families to share their stories with
their communities and others (as appropriate)
Facilitate, support and promote appointment of under-
represented cancer survivors and advocates to cancer
advisory and research councils
Advocate on behalf of un-/underrepresented communities
for a “seat at the table”
Facilitate, support and promote Community-Based
Participatory Research and Community-Based Participatory
Programs
My Journey from Cancer Patient & Survivor to Cancer Thriver & Advocate
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Keep Talking
MMy Journey from Cancer Patient & Survivor to Cancer Thriver & Advocate
RECAP: Step 1
Keep lines of communication open with
those who are not yet ready to hear
your cancer message.
(to anyone who will listen!)
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Always remember the importance of LISTENING! Listen to and learn from others.
Honor others’ experiences, cultures and
traditions.
Be respectful
Try to understand others’ perspectives,
especially when they differ from your
own.
RRECAP: Step 2
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Relativity What you see depends on where you stand. – Albert Einstein
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Work collaboratively to best serve cancer patients, their families and
communities, and fill in the gaps of unmet services and needs
Educate
Advocate
RRECAP: Step 3
Encourage
Facilitate
An Important Tip: Leave your ego at home!
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Appointment to local, state (California) and national/
federal cancer advisory and research councils
Election to leadership positions in regional and
national cancer organizations
Speaking Invitations (local, state and national) Conferences and training workshops
Testimony to governmental agencies and legislative bodies
Academic seminars
Review grant applications for cancer research,
outreach and education, health care service
programs and support services
Recipient of cancer leadership and advocacy awards
Opportunities to network, mentor, and for continued
learning
MMy Continuing Advocacy Journey
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“ Of all forms of inequality, injustice in healthcare is the most shocking and inhumane.”
- Rev. Martin Luther King, Jr. March 25, 1966
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Trends in Female Breast Cancer Incidence Rates* by Race and Ethnicity, 1975 to 2008
DeSantis C, Siegel R, Bandi P, Jemal A: Breast Cancer Statistics, 2011 (Fig 2). CA Cancer J Clin 61:409-418, 2011.
* Rates adjusted to 2000 U.S. standard population. Rates for AI/AN, AA/PI and H/L populations are 3-yr moving averages.
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Trends in Female Breast Cancer Death Rates* by Race and Ethnicity, 1975 to 2007
DeSantis C, Siegel R, Bandi P, Jemal A: Breast Cancer Statistics, 2011 (Figure 2). CA Cancer J Clin 61:409-18, 2011; Smigal C, Jemal A, Ward E, et al: Trends in breast cancer by race and ethnicity: update 2006. CA Cancer J Clin. 56(3):168-83, 2006.
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Barriers contributing to the unequal burden of cancer in U.S. communities
of color, poverty & oppression Lack of:
access to timely / quality cancer care health insurance
health care “home”
trust in health care systems, clinical
researchers by some communities clinical trials, e.g., Tuskegee syphilis trial (1932-
1972); Havasupai blood DNA studies (1990-
2003); predatory drug trials in India’s poor by
U.S./multinational pharmaceutical industry
(2010-2013)
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Barriers contributing to the unequal burden of cancer in U.S. communities
of color, poverty & oppression (cont.)
Lack of: meaningful language access
culturally competent cancer care race and ethnicity gender sexual orientation religious beliefs and practices socioeconomic status
disaggregated cancer data by granular
ethnicity e.g., “Asian/Pacific Islander” (“API”)
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U.S. breast cancer (and other health)
statistics are most often collected and
reported in the aggregate, as “API”.
For breast cancer, this results in “API”
women being reported as having
among the lowest breast cancer
incidence and mortality rates in the U.S.
The “API” Data Burden
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U.S. Poverty Rates, 2000
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14 14 13 10 9
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0
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40U.S. TotalNon-Hispanic White aloneBlack/African Am aloneLatino/HispanicAm Indian/AK Native aloneAPIHmongCambodianBangladeshiMalaysianLaotianIndonesianPakistaniVietnameseKoreanThaiChineseAsian IndianJapaneseFilipino
2000 Poverty Threshold
Family of 4 w/2 children = $17,463 Family of 4 w/3 children = $17,524
Individual living alone <65 yrs = $8,959 Individual living alone ≥65 yrs = $8,259
Perc
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1U.S. Census: Poverty in the United States: 2000 (P60-214; issued Sept 2001); 2Asian & Pacific Islander American Health Forum: API Center for Census Information and Services, 3Asian American Justice Center, and Asian Pacific American Legal Center: A Community of Contrasts: Asians and Pacific Islanders in the United States, 2005; AAPI’s Socioeconomic Status (U.S. Census 2000 Data), http://www.apiahf.com/cic/state_incpov.asp?stateID=00
% U.S. Totals by Race/Ethnity1, and Selected Asian Populations2,3
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Joinpoint Analyses of Annual Incidence Rates of Invasive Breast Cancer Among Women by
Race/Ethnicity, Los Angeles County, CA, 1972-2007 (Age-adjusted to the 2000 US Standard)
Liu L, Zhang J, Wu AH, Pike MC, Deapen D: Invasive breast cancer incidence trends by detailed race/ethnicity and age. Int J Cancer, 130(2):395-404, 2011.
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The policy / practice of collecting and
reporting race and ethnicity cancer data
in the aggregate obscures those
populations
with the highest (and the lowest) rates.
Making cancer control, cancer research
and grant funding decisions based on
aggregate rates only serves to
create greater disparities!
AA Call to Action: To eliminate health disparities in
U.S. communities of color, poverty and oppression and
achieve equality in cancer/health care across all U.S. tribal nations
and organizations, and U.S. associated territories and
jurisdictions!
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Reveal and embrace community expertise “If the problem is in the community, the solution is in the community.” Gilbert H. Friedell, M.D.
Public/Community Education & Awareness
Healthcare Provider Education & Training “Cultural Humility”
Research & Programmatic Funding
Public Policy & Legislation
Accountability & Enforcement
AA Call to Action
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“Knowing is not enough,
we must apply.
Willing is not enough,
we must do.” Goethe
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“Change will not come if we wait for some other person, or if we wait for some other time. We are the ones we’ve been waiting for.”
(Then) Senator Barack H. Obama on the U.S. Presidential campaign trail, 2008. Inaugurated as the 44th President of the United States of America, January 20, 2009
[last line excerpted from “Poem for South African Women”, by political activist, UC Professor,
and poet, June Jordan, who died of breast cancer at the age of 65 on June 14, 2002.]
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TThank you very much!
Susan Matsuko Shinagawa Cancer Thriver & Community Health Activist
Co-Founder & Past Chair, Asian & Pacific Islander National Cancer Survivors Network Past Chair, Intercultural Cancer Council
Internal Advisory Committee Member & Chair, Community Liaison Committee, San Diego State University/University of California, San Diego (SDSU/UCSD)
Cancer Center Comprehensive Partnership
Mobile (voice/text): 619-920-1907
Email: [email protected]
San Diego, California