A person who has been touched by cancer often wants to make a difference in the lives of people with the disease by becoming a cancer advocate. It can be a positive and empowering experience for those who choose to help others by working to improve the quality of cancer care. Advocating for others also provides a forum for those who want to share their own personal stories about dealing with the cancer experience, as well as the opportunity to speak out about critical issues directly affecting those living with cancer. This article is second in a two-part series about cancer advocacy. The first article, Cancer Self-Advocacy, explores becoming a self-advocate, communicating effectively with your doctor and health-care team, and taking action on your own behalf.

Defining advocacy

There are many ways to be a cancer advocate. In fact, there is a wide spectrum of advocacy activities that are all necessary in order to improve the lives of people with cancer.

At one end of the spectrum is self-advocacy, which is actively managing your own quality of care. Advocacy can also be done on the community level to support others and heighten awareness of the disease by participating in activities. At the other end of the spectrum is public interest advocacy, that is, communicating with local and national lawmakers to change public policy on important issues concerning cancer care.

Getting started

It's important to research different advocacy opportunities to determine how best our skills and talents fit with organization's mission. Consider talking with your health-care team about possible advocacy opportunities that share your interests and objectives. The following are advocacy activities where you can make a positive difference in the lives of people with cancer:

Supporting others. Cancer survivors often want to reach out to others with cancer and help guide them through the cancer experience by supporting, listening, and sharing their own personal story. This may mean speaking or visiting someone who is newly diagnosed with cancer or participating in a support group.

Educating the public. A cancer advocate may also work in his or her own community and at the national level to increase awareness and educate the public about cancer and the importance of screening and early detection. This may mean speaking to church and civic groups about critical issues affecting people living with cancer, such as insurance access and job discrimination. Raising awareness can also take the form of communicating with the local and national media to garner more attention about cancer-related issues.

Raising money for medical research. Advocates may also be involved in planning and participating in local and national fund-raising activities that support cancer-related research. These activities range from donating money to a cancer group through a workplace-giving program, to volunteering at a cancer walk where proceeds go to fund cancer research, and even buying products, such as postage stamps, where a portion of the money is set aside for cancer research.

Supporting clinical trials. Another way to support cancer-related research is to support cancer clinical trials. For example, patient advocate organizations can help to increase the number of people enrolled in clinical trials by listing clinical trial search engines on their websites. Individual patient advocates can serve on Institutional Review Boards (IRBs) at hospitals throughout the country.

Changing public policy. Cancer advocates may also choose to speak out and work to change laws affecting people with cancer. This could mean sending a letter to a legislator, testifying at governmental hearings, or speaking publicly about a cancer-related policy issue.

The American Society of Clinical Oncology (ASCO) and other cancer groups are working with Congress and federal agencies to better the lives of people with cancer through supporting or changing cancer-related policies. For example, ASCO is working with Congress to pass strong policies aimed at tobacco control.

More Information

Cancer.Net's Advocacy and Policy Center

ASCO's Progress in Cancer Timeline

ASCO Fact Sheet: "The Crisis in Cancer Research Funding"

Additional resources

National Coalition for Cancer Survivorship (NCCS): Advocacy & Policy

NCCS: Cancer Survival Toolbox

Coalition of National Cancer Cooperative Groups, Inc.: About Advocacy

Coalition of National Cancer Cooperative Groups, Inc.: Advocacy Toolkit

Cancer Leadership Council

Last Updated: December 13, 2007