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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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38

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19 19 18 16

14 14 13 10 9

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0

5

10

15

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25

30

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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

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.

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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: SMSadvocacy.cancer@gmail.com

San Diego, California