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Taking It to the Streets:Breast Cancer Advocacy in Your Community… and Beyond

Plenary Session TwoBellevue, WA February 23, 2013

Susan Matsuko ShinagawaCancer Thriver & Community Health ActivistCo-Founder & Past Chair, Asian & Pacific Islander National Cancer

Survivors NetworkPast Chair, Intercultural Cancer Council

Internal Advisory Committee Member & Chair, Community Liaison Committee, SDSU/UCSD Cancer Center Comprehensive Partnership

2Taken at The March: Coming Together to Conquer Cancer, Candlelight Vigil at the Lincoln Memorial and the National Mall in Washington, D.C., September 25, 1998.

Smile, wave, and say, “Cheese” !!

My Journeyfrom

Cancer Patient/Survivorto

Cancer Thriver/Advocateto

Community Health Activist

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Speaking Truth to Power

“The journey toward advocacyis 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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was a memorable and newsworthy year

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Japa

nese

Pea

ce B

ell

USS Arizona Memorial

Capt. Donald K. Ross, USN (Ret)

Medal of Honor Recipient

Pearl Harbor Commemorative Medal

December 7, 1991

Three Specific Events

Discovery

ResponsePronouncement

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Discovery

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Response

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“You’re too young to have

breast cancer,…”

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“You have

no family history

of cancer,…”

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“and besides,…”

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“Asian women

don’t get breast cancer.”

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“You have nothing to worry about.”

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99.9% certainty

Pronouncement

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Breast Cancer

I’m sorry, Susan, but you have

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First Three Steps on the road to

Becoming a Cancer

Survivor/Advocate

My Journey from Cancer Patient & Survivor to

Cancer Thriver & AdvocateStep 1: Sharing my

personal cancer storyIndividuals and communities:

Women (in general) and young women (specifically)Asian and Pacific Islander womenAsian and Pacific Islander communitiesOther women and communities of color

Professional Associations & Service ClubsUniversity of California, San Diego Women’s Caucus UCSD Pan Asian Staff AssociationStaff Subcommittee of the UCSD Chancellor's Affirmative Action Advisory CommitteeSan Diego Junior LeagueWomen’s Clubs, Kiwanis Club, Soroptimists InternationalLocal 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

Step 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 others26

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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Step 1 (cont.)

Sharing my personal cancer story with:

Step 2: Listening to & learning from others (very important!)

Cancer SurvivorsBreast cancer survivors Survivors of other cancer types and sitesSurvivors 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 membersCaregivers 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

Step 2 (cont.) : Listening to & learning from

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Step 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 communitiesAdvocate 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

My Journey from Cancer Patient & Survivor to

Cancer Thriver & AdvocateRECAP: 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.

RECAP: 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

RECAP: Step 3

Encourage

Facilitate

An Important Tip: Leave your ego at home! 34

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 bodiesAcademic 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

My Continuing Advocacy Journey

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“ Of all forms of inequality, injustice in healthcareis 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.

37%

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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 accessculturally competent cancer care

race and ethnicitygendersexual orientationreligious beliefs and practicessocioeconomic 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

Series10

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2221

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19 19 18

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U.S. TotalNon-Hispanic White aloneBlack/African Am aloneLatino/HispanicAm Indian/AK Native aloneAPIHmongCambodianBangladeshiMalaysianLaotianIndonesianPakistaniVietnameseKoreanThaiChineseAsian IndianJapaneseFilipino

2000 Poverty Threshold

Family of 4 w/2 children = $17,463Family of 4 w/3 children = $17,524

Individual living alone <65 yrs = $8,959Individual living alone ≥65 yrs = $8,259

Perc

enta

ge

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. 43

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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!

A 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

A 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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Thank you very much!

Susan Matsuko Shinagawa

Cancer Thriver & Community Health ActivistCo-Founder & Past Chair, Asian & Pacific Islander National Cancer

Survivors NetworkPast 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): 619-920-1907Email: SMSadvocacy.cancer@gmail.com

San Diego, California