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You are here: Home1 / Get Involved2 / What is Advocacy?

What Is Advocacy?

In cancer survivorship, advocacy is a continuum. It may begin at the personal level, but along the survivorship journey, self-advocacy efforts may broaden to include first group or organization advocacy, and later may move to public advocacy efforts.

Personal Advocacy

Self-advocacy is a way of taking charge in an overwhelming environment of tests, treatment, and doctors’ offices. From arming oneself with good information, to seeking second opinions, to locating resources for support, to knowing how to ask the right questions — people with cancer can become self-advocates. Personal empowerment can mean the difference between maintaining hope and enhancing quality of life or feeling helpless and uncertain.

Many find the years after a cancer diagnosis to be challenging. It is during this time that cancer survivors realize that their lives will never be the same. Family and friends cannot understand why survivors are not happy simply to be alive, and support systems that were in place during the treatment may diminish or disappear. It is at this point that many survivors seek out other survivors with the same experiences.

This life transformation, at any age, calls for another type of self-advocacy. With the underlying idea that they “want to give something back,” in gratitude for their survival, many survivors seek ways to share their experience with others. This shared knowledge, the idea that information is powerful — the veteran helping the rookie — is what the survivorship movement is largely about. The passsing of wisdom from a more seasoned survivor to the newcomer provides a strong foundation for people who have had cancer to play a more proactive role in making decisions about their lives.

Advocacy for Others

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Having been successful in exchanging information with others who share a cancer experience, survivors can extend their advocacy efforts to the larger community. Through networking with other people, survivors can learn more about specific issues (e.g., sexuality, infertility, work, insurance, or reimbursement). Armed once again with valuable information, cancer survivors can go on to tell others their shared experiences and advocate for changes that can have a broad impact.

One of the easiest and most satisfying ways to advocate for others is to speak at the local community level — to church and civic groups, to medical students and physicians, oncology nurses, social workers, and others — to educate them about the complex issues that dominate survivors’ lives after a diagnosis of cancer. This public speaking becomes a testimony that affirms one’s survival, defies the myths and stigmas about cancer, and perhaps reaches others who are silently struggling with similar issues.

Public Interest Advocacy

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The exponential growth of the survivorship movement increasingly is realized by the many long-term survivors who go on to become professional survivor advocates. These individuals have taken their learned experiences from diagnosis, through treatment and recovery, and become advocates participating in the national cancer survivorship movement. These people have effected change in public policy including appropriations for cancer research; pressed for more survivorship research; given public witness testimony at both the local and federal levels of government; and contributed to the body of knowledge about living a better quality of life after a diagnosis of cancer, either through professional journals, or the popular press.

By telling “one’s story,” the net is cast much wider. Advocacy training for media relations is a burgeoning field of interest among consumer groups today and provides yet another avenue for survivors to “testify” about their experiences.

As people with a history of cancer recount their stories in the community and to the media, they become recognized experts on the compelling issues that have impacted their lives and the lives of the community of survivors with whom they have become involved. Depending on one’s vocation, avocation, or other life circumstances, the interest one takes in sharing this experience is limited only by the desire to speak up — whether it is survivor-to-survivor in support groups, in the workplace, before state legislators, or to Congress. Advocacy is an invaluable skill set that can empower persons with cancer and can maximize the quality or their own survival as well as that of others.

Read the Full Article “Advocacy: The Cornerstone of Cancer Survivorship”

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Latest News

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NCCS, Cancer Groups Urge CMS to Withdraw Most Favored Nation (MFN) Medicare Part B Rule That Will Harm Patients and Reduce Access to Care

December 22, 2020
The National Coalition for Cancer Survivorship (NCCS) joined other member organizations…
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NCCS Letter to HHS

NCCS Letter to HHS: Proposed Regulatory Review Rule Would Create Unnecessary Uncertainty for Patients

December 9, 2020
The National Coalition for Cancer Survivorship (NCCS) recently submitted comments…
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https://canceradvocacy.org/wp-content/uploads/HHS-Humphrey-bldg-1200-1030x515-1.jpg 515 1030 NCCS Staff https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png NCCS Staff2020-12-09 17:30:502020-12-10 08:22:55NCCS Letter to HHS: Proposed Regulatory Review Rule Would Create Unnecessary Uncertainty for Patients
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NCCS Opposes Most Favored Nation (MFN) Rule: New Medicare Part B Drug Payment Model Will Harm Patients

December 3, 2020
The National Coalition for Cancer Survivorship (NCCS) opposes the Most Favored Nation…
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https://canceradvocacy.org/wp-content/uploads/HHS-Humphrey-bldg-1200.jpg 600 1200 NCCS Staff https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png NCCS Staff2020-12-03 21:26:462020-12-03 21:28:06NCCS Opposes Most Favored Nation (MFN) Rule: New Medicare Part B Drug Payment Model Will Harm Patients

Take Action

Stovall Award

The Ellen L. Stovall Award for Innovation in Patient-Centered Cancer Care is a unique opportunity for patients and survivors to recognize pioneers who are transforming the cancer care system.

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The NCCS Cancer Policy & Advocacy Team (CPAT) is a program for survivors and caregivers to learn about pressing policy issues that affect quality cancer care in order to be engaged as advocates in public policy around the needs of cancer survivors.

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NCCS represents the millions of Americans who share a common experience – the survivorship experience – living with, through and beyond a cancer diagnosis.

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  • About
    • Our Mission
    • Our History
    • Our Leadership
      • Policy Advisors
    • Employment
    • Partnerships
    • Financial Information
  • Policy
    • Quality Cancer Care
    • Access to Care
    • Health Equity
    • Redefining Functional Status (RFS)
    • 2020 State of Cancer Survivorship Survey
    • Cancer Care Planning and Communications Act (CCPCA)
  • Get Involved
    • What is Advocacy?
    • Cancer Policy and Advocacy Team (CPAT)
    • Elevating Survivorship
    • Survivor Stories
    • Cancerversary
    • State Based Cancer Advocacy
  • Resources
    • Survivorship Checklist
    • Cancer Survival Toolbox
    • Telehealth
    • Publications
      • Talking With Your Doctor
      • Self Advocacy
      • Employment Rights
      • Remaining Hopeful
    • Taking Charge of Your Care
    • Care Planning for Cancer Survivors
    • Tools For Care Providers
    • COVID-19 Resources for Cancer Survivors
    • Order Our Resources
  • News
    • Cancer Convos Podcast
  • Events
    • Ellen L. Stovall Award
      • 2020 Stovall Awards
      • Honorees
      • Sponsors
      • Committees
      • Reception
      • Nominations
    • Cancer Policy Roundtable
      • Fall 2020 Cancer Policy Roundtable
      • Spring 2020 Cancer Policy Roundtable
    • Cancer Policy and Advocacy Team (CPAT) Symposium 2020
    • Webinars
  • Contact Us

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Harmar Brereton, MD

Founder
Northeast Regional Cancer Institute

 

“Perhaps one of the most impactful collaborations in Dr. Brereton’s extraordinary career remains his early work and long friendship with Ellen Stovall. Through him, and in turn through the thousands of lives he has touched, Ellen’s work continues, and her mission lives on.”

—Karen M. Saunders
President, Northeast Regional Cancer Institute