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ADVOCACY, MEDICAL INFORMATION AND RESEARCH


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.”

 
 

Breast Cancer Resource Directory of North Carolina | Third Edition 2006 - 2007


Copyright 2006, Jamie Konarski Davidson, Women Helping Women, Elizabeth Mahanna, North Carolina Institute for Public Health, and UNC’s Lineberger Comprehensive Cancer Center. Portions of the Breast Cancer Resource Directory of North Carolina may be copied without permission for educational purposes only. The Breast Cancer Resource Directory of North Carolina is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through the Breast Cancer Resource Directory of North Carolina should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, you should consult your healthcare provider.

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