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Getting Involved in Advocacy

Reviewed by: Nancy Buermeyer

Updated November 25, 2013

 Throughout your breast cancer experience, there may be moments when you think, “Someone should do something about that!”

 You may feel frustrated, angry, sad, encouraged, grateful or blessed by certain events. That may spur you to advocate, voice your support or take action, to achieve changes for yourself and other women.

 Like many young women, you may be motivated to get involved in breast cancer advocacy by your own breast cancer history.

What Advocates Do

 As a young woman affected by breast cancer, your voice is powerful. You can advocate for breast cancer issues and concerns in many different ways. You do not need to have a lot of free time or be a cancer expert to make a difference as an advocate. Remember that you are the expert on your own experience, so don’t feel intimidated by the thought of advocating to medical professionals, scientists, policy makers or community audiences.

 Advocates take action in many ways. You might decide to

  • become more active in your own care
  • help other women be better informed about breastcancer
  • provide emotional support to women afterdiagnosis
  • push for more research in areas important to you
  • improve financial assistance for affected women
  • influence public policy about breast cancer issues
  • Women often first advocate for themselves. As a self advocate, you speak up for yourself, ask questions of your healthcare team and seek out second opinions to verify answers and recommendations you hear. It is your right to do these things. By reading or viewing breast cancer information,you can advocate better for what you want, from participation in a clinical trial or other treatment options to fertility preservation.

You may want to advocate for your peers, such as young women, those with a specific breast cancer type or those affected by lymphedema. You may work to educate others in your own community or lobby on a state or national level for policy changes and laws related to breast cancer.

 Many advocates volunteer for breast cancer organizations,such as the women who provide support on Living Beyond Breast Cancer’s Breast Cancer Helpline.

How to Get Started

There’s no right time to become a breast cancer advocate. Do it when the time is right for you.

 Self advocacy may start when you are seeking a diagnosis or after receiving one. Some women become advocates while still in primary treatment. Others decide to get involved later.

Think about the breast cancer concerns you feel passionately about and look online for groups involved with those issues.

Determine how you could become involved as an advocate. Do you want to

  • speak one-on-one with others
  • talk to community audiences
  • lobby for laws and policy changes (by phone,computer or letter-writing)
  • attend events to promote causes
  • participate as a consumer advocate on advisory panels and committees
  • travel to state capitals or Washington, D.C. to lobby legislators

Contact the groups that interest you to determine what advocacy opportunities are available. Talk with them about the issues you care about and how you’d like to advocate. Get involved by taking one action, then find out what else you can do. Learn more about how to be an advocate (see the Resources for Advocacy Efforts section below).

Avoid “reinventing the wheel” by starting a group or advocating alone for issues outside of your own care. There’s greater impact and better results when many like-minded people work together. If no group advocates for your concern, bring your ideas to an existing organization and collaborate.

Read one woman’s story about advocating for an issue she cares about with the help of a larger group.

Resources for Advocacy Efforts

As you become active, you may discover that learning more—from advocacy techniques to information about the current science of breast cancer—will help you be a more effective advocate. Gaining more knowledge may also open up new ways for you to participate in advocacy.

The National Breast Cancer Coalition (NBCC), an organization with a focus on health policy, conducts a training program for breast cancer advocates known as ProjectLEAD. The program has workshops and courses to help you understand breast cancer science, research and advocacy issues. NBCC also offers some of its advocacy training online.

LBBC advocates for legislation, policies and issues that impact the quality of life for all women affected by breast cancer. We are committed to reflecting the diverse concerns and needs of women from all backgrounds and all diagnoses who are facing and managing breast cancer. LBBC also offers an online advocacy directory, with links to organizations involved in breast cancer advocacy, patient advocacy and research advocacy.

This article was supported by Cooperative Agreement Number DP11-1111 from The Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention.

Denver, CO  ·  September 13, 2014

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