Breast Cancer Advocacy
Never doubt that a small
group of thoughtful committed citizens can
change the world. Indeed, it’s
the only thing that ever has.
— Margaret Mead
Making a difference can take
many forms. In this section, we share some
of the possibilities for what you, as a breast
cancer survivor, family member, friend or
concerned citizen, can do if you want to
join others in making a difference on behalf
of those who are affected by breast cancer.
As
you will see, there are many different
ways to be involved in breast cancer issues
and advocacy. You may find that what you
first thought would be the best way to get
involved is not for you, or that your interests
change over time. There are many options
and opportunities to help. You can discover
what works best for you—in your own
home, home town, on a state level or in
our nation’s capitol. There’s
a place for everyone.
What
does it mean to be an advocate?
By definition, an advocate is one
who actively supports or defends a cause.
Anyone can be an advocate, and there are
many ways to be an advocate. It can be
on a personal level or something more public.
Advocacy is all about making a difference.
Because
so many breast cancer survivors, family
members, friends and the general public
care about what happens in the future
and want to make a difference, the opportunities
to participate as a breast cancer advocate
abound, both in number and type.
However,
as a breast cancer survivor, you should
not feel any pressure to participate in advocacy
activities. Some women are more comfortable
leaving their breast cancer behind and
moving forward with the rest of their lives—focusing
on what matters to them, such as spending
time with family, pursuing lifelong dreams,
traveling and more. While being an advocate
can be very rewarding for many people,
it is not for everyone. Do what is most comfortable
for you.
How did breast cancer advocacy
begin?
A generation ago, breast cancer
was not as publicly visible as it is now.
Many women did not want to talk about breast
cancer and share their stories. Others
wanted to shout from the rooftops
and connect with the world to make
the experience better for those following
in their footsteps. In the past,
advocacy for breast cancer was mainly
expressed through public relations,
fundraising, personal support and
some community outreach.
As more and more
women told their stories, they helped
focus public attention on treatment concerns,
emotional fears and the lack of research
efforts. Groups of these pioneers banded
together and formed grassroots organizations
to demand more funding and research for
breast cancer.
This form of “political
advocacy” for
breast cancer has helped breast
cancer patients in numerous ways. Women
now have more access to screening and
diagnosis. Breast cancer advocates
in organizations such as the National
Breast Cancer Coalition have
been instrumental in helping to pass
laws such as the Breast and Cervical
Cancer Treatment Act of 2000, which
established a program available to
all states that provides breast and
cervical cancer treatment coverage
to low-income, uninsured women. Advocates
have called for a voice in policy and
research decisions to make sure that
better, more effective treatment and
care for breast cancer patients follows
from increased funding for breast cancer
research.
How can you make a difference?
There are many ways to be a breast
cancer advocate without going to Washington,
DC, or traveling across the nation
waving banners. Making a difference
can start in your own community. It
can begin in simple ways—bring
a meal, do an errand, help
with chores, or drive a cancer patient to an appointment.
If you want to take it a step
further, in the following section we provide examples
of seven different types of
advocacy. See the Resources at the end of this chapter
for phone numbers and web sites
for organizations to learn more or to help you get
started.
How
Advocacy Can Take Various Forms (One
Woman’s Story)
I was diagnosed with breast
cancer in 1990. While in treatment,
I knew I wanted to continue my lifelong
volunteer work in some way. I chose
to become a Road to Recovery volunteer
(through the American Cancer Society)
because it was helpful, time limited
and required little emotional involvement.
After my treatment
was over, I didn’t just want
to “put cancer behind me.” I
wanted to make a difference. So,
as many women do, I found myself
talking with other women about breast
cancer—both those newly-diagnosed
and those fearing the diagnosis.
My interest in learning as much as
I could about how cancer begins and
progresses—and what is being
done to fight it—made those
conversations more effective.
I also became an American
Cancer volunteer with the state “Breast
Action” team and began to contribute
to the NC Breast and Cervical Cancer
Control Program. During the early
1990s I made my first trip to Washington,
DC, to educate our congressional
delegation and have found it very
satisfying to continue that successful
effort through the years.
Over time, my advocacy
activities have widened. In 1994
I co-founded the Breast Cancer Coalition
of North Carolina, and since 1996
I have been part of the NC Triangle
Race for the Cure (through the Susan
G. Komen Breast Cancer Foundation).
By the late 1990s I was invited to
work with researchers in a variety
of settings to bring the patient
perspective to their discussions.
I have found this to be the most
personally satisfying kind of advocacy
for me.
Barbara Parker, Breast
Cancer Survivor & Advocate
Raleigh, NC |
Personal Support Advocacy
As someone who has “been there,” you
can provide personal support
for those newly diagnosed. Each time you
share your personal story with another,
you are creating awareness and helping
others. You may find it very gratifying
to offer this type of support when needed.
- The
Women Building Bridges program (see
page 197) in North Carolina provides survivors
with opportunities to offer peer support
for newly diagnosed women.
- The American
Cancer Society’s
Reach to Recovery visitation
program provides breast cancer survivors with opportunities
to offer information
and support.
Community Outreach Advocacy
If your experience or interest
is in educating or reaching out
to others to inform them about
early diagnosis and treatment or
about how they might minimize the
potential impact of breast cancer
on their lives and promote early
diagnosis and treatment, this may be
the choice for you.
- This type of advocacy
can include running a breast cancer support
group, writing articles
and giving presentations,
educating others in the workplace or
volunteering at a local hospice.
- Patient education, support
programs and health fairs
are good examples of local involvement. You might consider contacting
your healthcare team,
breast cancer support group, local hospital or cancer treatment
center, or cancer
support center to see if there are things you can do to help.
- The Breast Cancer
Resource Directory of North Carolina
is a tremendous educational outreach project with a wide range of volunteer
opportunities,
and help is always welcome and needed to
make a difference and help reach North
Carolina’s
breast cancer community.
Public Relations Advocacy
For those who are most
interested in raising awareness
about breast cancer and
maintaining a high public
perception of the impact of this
disease, opportunities are seemingly
endless.
- From wearing pink
ribbons to reminding friends to get a mammogram
to getting involved in Breast Cancer Awareness Month activities
in October of each
year, how you spread the word is up to you.
Fundraising Advocacy
For some people, the
tangible contribution
they make by their involvement
in fundraising is most
satisfying. This type
of advocacy can come
in the form of a financial
contribution as well
as giving of your time.
There are many opportunities
to volunteer in fundraising events
nationally and here in North Carolina.
- There are four North
Carolina-based Affiliates of
the Susan G. Komen Breast Cancer Foundation
(Komen NC Triangle, Komen North Carolina
Triad, Komen NC Foothills and Komen Charlotte
Affiliates). Each Affiliate holds an annual
Race for the Cure and other events to raise
money for breast cancer, most of which
stays in the North Carolina communities
to support local breast cancer programs.
- The American Cancer Society
holds numerous annual events across North
Carolina, including Relay for Life (for
all cancer survivors) and Making Strides
Against Breast Cancer.
Science/Research
Advocacy
Bringing the voice
of the breast cancer
survivor to researchers
has brought new insight
and issues about breast
cancer to their attention.
This has improved the
process of scientific
research in many ways.
- You can participate
in this type of advocacy in
North Carolina in various ways, including involvement in PAIR (Patient
Advocates in
Research). On a national level, there are
various programs such as the Project LEAD
Science Seminar through the National Breast
Cancer Coalition, or CARRA (Consumer Advocates
in Research and Related Activities) through
the National Cancer Institute.
Policy Development
Advocacy
Many of the institutions
that make decisions that
impact people with breast
cancer are beginning to invite
those same people (including
breast cancer survivors) to “have a
seat at the table” where
decisions are
being made. This
gives breast
cancer survivors
and advocates
a chance to be
involved in the
process. Opportunities
are available
in North Carolina
and nationally.
- The
Advisory Committee
for Cancer
Coordination and Control (“A4C”)in
North Carolina
includes cancer
survivors/advocates
on some of
their sub-committees.
Political
Action Advocacy
One of the more
direct ways to
have an impact
is to contact legislators
such as your state senators
or representatives or other
officials in your hometown
or state. Lobbying of this type, as
well as nationally, has helped increase
breast cancer funding throughout the
nation.
- Some examples of
political action advocacy include
the annual Advocacy Training Conference, Project LEAD (three-day conference
held every
Spring in Washington, DC) and Advocate
Lobby Day sponsored by the National Breast
Cancer Coalition.
Advocacy, in
whatever area
you choose to
participate,
provides an opportunity
for individuals
to play a vital
part in the efforts to increase
awareness of breast cancer
and promote proactive behavior,
education and research.
Every one of us can make a difference,
as individuals or
as part of a group. Wearing a simple pink ribbon requires
no words but sends
a loud message for breast cancer awareness.
The key to advocacy is finding
out where you feel most comfortable
in expressing your talents and
focusing your energy. The rewards
on a personal level can be great,
whether you are able to help just
one woman or thousands. We encourage
you to test the waters and see
where you can help.
See the Resources to find people
and organizations to contact
to learn more about advocacy and what you
can do. Also, check Women
Building Bridges on page 197 for North
Carolina breast cancer survivors/advocates
who are willing to talk about their experiences
with advocacy and
give information and support.
RESOURCES
Organizations
North Carolina Advocacy Organizations
Blue Ridge Cancer Coalition (Boone, NC)
Sue Counts, Project Director
828.264.3061
www.blueridgecancer.org
A regional cancer control network of community-based
coalitions and cancer action teams. Provides
cancer prevention and early detection education,
resources and support to cancer survivors
and community. Covers Alleghany, Ashe, Surry,
Wilkes and Watauga Counties.
Breast Cancer Resource Directory of North
Carolina
800.514.4860
bcresourcedirectory.org
Free comprehensive statewide resource for
breast cancer patients, survivors, family,
friends and healthcare professionals. Provides
information, support and resources for anyone
impacted by a breast cancer diagnosis.
Catawba County Breast Cancer Coalition
Brenda Putnam, Coordinator
828.326.2176
A multidisciplinary group that includes healthcare
professionals and educators along with breast
cancer survivors and Reach to Recovery volunteers.
Friends For an Earlier Breast Cancer Test
(Greensboro, NC)
336.286.6620 or 888.792.3062
www.earlier.org
A non-profit organization established to
raise funds for research on methods for earlier
detection of breast cancer.
Hermanas Unidas el Contra Cancer (Cabarrus
County)
704.920.1120 (English and Spanish)
This group of Latina lay health advisors
meets the second Friday of the month at 10:00
am at The Hispanic Learning Center to plan
events and breast health education and outreach
strategies. Contact JoAnna M. Brown at jmbrown@cabarrushealth.org
for more information. (2006 Komen Charlotte
Affiliate Grantee)
North Carolina Advisory Committee on Cancer
Coordination and Control (A4C) (Raleigh,
NC)
Cancer Prevention and Control Branch,
Division of Public Health, DHHS
919.715.3341
www.nccancer.org
Established in 1993, A4C’s mission
is to help reduce cancer incidence and deaths
in North Carolina, and enhance access to
treatment and support services through educating
and advising government officials, public
and private organizations, and the general
public.
North Carolina Committee to Defend Health
Care
(Chapel Hill, NC)
919.338.2535
www.ncdefendhealthcare.org
A non-profit, citizen-action group working
for quality, affordable health care for all
North Carolina residents.
North Carolina General Assembly (Raleigh,
NC)
919.733.7928
www.ncga.state.nc.us
Has information on laws relative to mammography,
reconstruction, mastectomy, genetic discrimination,
and more. Find out how to contact your North
Carolina and U.S. Senators and Representatives
and view bills under consideration.
Patient Advocates in Research (PAIR)
North Carolina PAIR Coordinator: Barbara
Parker, 919.782.1099
Part of a nationwide network determined
to bring the patient perspective into medical
research. In North Carolina PAIR is working
with breast cancer researchers at Duke Comprehensive
Cancer Center and UNC’s Lineberger
Comprehensive Cancer Center and with policy
groups in the state.
Sisko Foundation (Raleigh, NC)
919.844.0530
www.siskofoundation.org
Mission is to raise breast cancer awareness,
fund improvements in research and treatment,
and support breast cancer patients and their
families. Hosts annual “Raise a Racquet
Against Breast Cancer” event.
Sisters in Partnership (Cabarrus County)
704.920.1255
This group of African American lay health
advisors meets the 3rd Saturday of the month
at 9:00 am in the Women’s Center at
NorthEast Medical Center to plan events and
breast health education and outreach strategies.
Contact Virginia W. Hunter, vwhunter@cabarrus
health, for more information. (2006 Komen
Charlotte Affiliate Grantee)
Sisters Network
713.781.0225 or 866.781.1808
www.sistersnetworkinc.org
A national, African-American breast cancer
survivor organization, committed to increasing
local and national attention to the impact
of breast cancer in the African-American
community. There are three local chapters
in North Carolina with fundraising, support
group, and breast cancer awareness activities.
- Piedmont
Carolinas Chapter (Tracy Cook-Brewton),
Gastonia, NC, 704.865.2227 or 704.747.3319
or
- Triangle Chapter (Valarie
Worthy), Durham, NC, 919.419.8284 or
- Southeastern
NC Chapter (Irene Stuart), Lumberton,
NC, 910.738.3175
Susan G. Komen Breast Cancer Foundation
(North Carolina Affiliates)
800.I’M.AWARE (800.462.9273)
www.komen.org or www.breastcancerinfo.org
Provides information on breast cancer and
offers many educational brochures. Four affiliates
in North Carolina each host annual Race for
the Cure event and other fundraising and
advocacy events such as Gardens for the Cure
and an annual Survivors’ Tea:
- Komen
NC Triangle (Durham, NC) - 919.493.CURE
or www.nctrianglerace.org
- Komen North Carolina
Triad (Greensboro, NC) - 336.721.0037
or www.triadrace.com
- Komen NC Foothills
(Lenoir, NC - 828.781.CURE or www.komenncfoothills.com
- Komen
Charlotte (Charlotte, NC) - 704.347.8181
or www.charlotterftc.org
Women Helping Women (Raleigh, NC)
919.846.1203
www.whwnc.org
Survivor-led nonprofit organization working
to improve quality of life for women living
with breast cancer. Assists low-income, uninsured,
or underinsured women financially with purchase
of prostheses, wigs and emergency medical
funds. Home of the Breast Cancer Resource
Directory of North Carolina, Women Helping
Women distributes the Resource Directory
and other information about follow-up care
and resources free of charge.
National Advocacy Organizations
American Cancer Society (ACS)
800.ACS.2345 or 888.227.6333 (in North Carolina)
866.228.4327 (TTY)
www.cancer.org
Nationwide community-based health organization
for cancer research, education, advocacy
and service. Contact for information about
local Reach to Recovery, Road to Recovery
and Look Good . . . Feel Better programs,
Relays for Life and Making Strides Against
Breast Cancer events in your community.
Black Women’s
Health Imperative
202.548.4000
www.blackwomenshealth.org
An African American health education, research,
advocacy and leadership development institution.
It seeks to develop and communicate effective
health information, products and programs
to African American women.
Breast Cancer Action
415.243.9301 or 877.2STOPBC (278.6722)
www.bcaction.org
National activitist organization that works
on a range of breast cancer issues, with
a focus on the environment. Web site provides
newsletter (English and Spanish), e-mail
alert list, reports on breast cancer conferences
and ways to get involved. See also www.thinkbeforeyoupink.org
to learn more about where funds from “pink
ribbon” products go.
The Breast Cancer Fund
415.543.2979 or 800.487.0492
www.breastcancerfund.org
A breast cancer advocacy, education, awareness
and support organization which supports ongoing
projects, conferences and grants.
Consumer Advocates in Research and Related
Activities (CARRA)
301.594.3194
http://liaison.cancer.gov/CARRA or http://la.cancer.gov
Program of the National Cancer Institute
that encourages people affected by cancer
to provide their viewpoints and ideas directly
to NCI staff.
Hurricane Voices Breast Cancer Foundation
866.667.3300 (toll-free)
www.hurricanevoices.org
Its mission is to raise public awareness
and break down the barriers to the causes
and cures for breast cancer. Has public awareness
campaigns, educational programs, online newsletter
and more.
Men Against Breast Cancer
866.547.MABC
www.menagainstbreastcancer.org
Provides national support services to educate
and empower men to be effective caregivers
as well as active participants in the fight
to eradicate breast cancer as a life-threatening
disease.
National
Asian Women’s
Health Organization
415.773.2838
www.nawho.org
A powerful voice for the health of Asian
American women’s health and families
through research, education and advocacy.
National Breast Cancer Awareness Month (NBCAM)
877.88.NBCAM
www.nbcam.org
Dedicated to increasing awareness of breast
cancer issues, especially the importance
of early detection, through nationwide educational
campaign.
National Breast Cancer Coalition (NBCC)
202.296.7477 or 800.622.2838
www.stopbreastcancer.org
A national, grassroots advocacy group. Activities
include the free “Guide to Quality
Breast Cancer Care,” Advocacy Training
conference, legislative activities, education
and outreach and clinical trials project.
Sponsors Project LEAD (teaching advocates
to understand scientific concepts and quality
research).
National
Cancer Institute’s
Cancer Information Service
800.4.CANCER (800.422.6237)
www.cancer.gov
Offers the free booklet, “Facing Forward
Series: Ways You Can Make a Difference,” about
getting involved in advocacy.
National Coalition for Cancer Survivorship
301.650.9127 or 877.NCCS.YES (877.622.7937)
www.canceradvocacy.org
Non-profit organization working to have the
survivors’ voices heard through advocacy
and education. Has free materials about advocacy.
Patient Advocate Foundation
800.532.5274
www.patientadvocate.org
Serves as liaison between patient and insurer
or employer on matters related to their diagnosis.
Works to assure access to care, employment
and financial stability.
Sisters Network
713.781.0225 or 866.781.1808
www.sistersnetworkinc.org
A national, African-American breast cancer
survivors organization, committed to increasing
local and national attention to the impact
of breast cancer in the African-American
community.
Susan G. Komen Breast Cancer Foundation
800.I’M.AWARE (800.462.9273)
www.komen.org
Provides information on breast cancer and
offers many educational brochures. Conducts
fundraising around the country for breast
cancer research and community programs.
U.S. Food & Drug
Administration
Cancer Liaison Program
301.827.4460 or 888.INFOFDA (888.463.6332)
www.fda.gov/oashi/cancer/cancer.html
Has opportunities for qualified people with
strong community ties and health, medical
or science background to present consumer
perspective, act as committee public liaison
and discuss scientific issues.
Y-ME National Breast Cancer Organization
312.986.8338 or 800.221.2141
800.986.9505 (Spanish)
www.y-me.org
Breast cancer education and support organization.
Also has information for men with breast
cancer. Contact to find out about advocacy
projects in your area.
Young Survival Coalition
212.206.6610 or 877.YSC.1011 (877.972.1011)
www.youngsurvival.org
Focuses on the issues and challenges faced
by women age 40 and younger who are diagnosed
with breast cancer.
Books and More
Breast
Cancer: Society Shapes an Epidemic,
by Anne Kasper and Susan Ferguson (2002).
Shows how breast cancer is tied to the political,
social, and economic conditions of our time,
outlining an agenda for activism.
The Breast
Cancer Wars: Hope, Fear and the Pursuit
of a Cure in the Twentieth-Century America, by Barron H. Lerner (2001). Chronicles
breast cancer in America, from the beginning
of diagnosis and treatment to the slow progress
against the disease to the present.
A Darker
Ribbon: Breast Cancer, Women and Their
Doctors in the Twentieth Century, by
Ellen Leopold (2000). A cultural history
of the social attitudes and medical treatments
for breast cancer that influence the relationship
between women, their disease and their doctors.
The Feisty
Woman’s
Breast Cancer Book, by Elaine Ratner (1999).
Ratner uses her mastectomy experience to
urge women to become aggressive advocates
for their treatment and recovery and to
provide informal networks of information.
Patient
No More: The Politics of Breast Cancer, by Sharon Batt (1994).
Award-winning journalist and advocate offers
an analysis of the grassroots breast
activism that has challenged the cancer industry.
To Dance
With the Devil: The New War on Breast Cancer,
by Karen Stabiner (1998). Reviews the breast
cancer advocacy movement and state of breast
cancer treatment and research through breast
cancer surgeon and advocate, Dr. Susan
Love, and some of her patients.
Web Sites
Advocacy, from People Living With Cancer
www.peoplelivingwithcancer.org
This site from the American Society of Clinical
Oncology has information on advocacy. Click
on “Community Center” on the
left, then on “Advocacy.”
Breast Cancer Legislation--USA
http://members.aol.com/BCLEGIS/index.htm
Information regarding pending legislation
in the US Congress and how to contact congressional
members.
CancerCare
www.cancercare.org
Provides emotional support, information and
practical help. Web site has advocacy information.
Click on “Managing Your Cancer” and
choose “Health Care Policy and Advocacy.”
Fight-Breastcancer.com
http://www.Fight-Breastcancer.com
Information on state initiatives, government
organizations, Senate and House bills.
Society for Women’s
Health Research
www.womens-health.org
Launched national campaign designed to increase
women’s understanding about clinical
research. See www.womancando.org for more
information.
SusanLoveMD.org
www.susanlovemd.org
Has advocacy page with information about
the history of breast cancer advocacy and
links to national advocacy groups. Click
on “Living With” then on “How
do I get involved—advocacy.”
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