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Cancer advocacy starts with one person advocating to improve the circumstances of one cancer patient. Championing your child's interests as you deal with health care providers is an example of advocacy. Over time, some families find that advocating for their children with cancer can evolve into advocating on behalf of other families and children affected by cancer.

 

You can work at the individual, community, institutional, or national policy level to effect change. Advocacy is necessary at all these points on the continuum if children with cancer and long-term survivors are to receive quality care, and if childhood cancer is to be eradicated.

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Who is an advocate?

Local Advocacy

Building Coalitions

Potential Allies

Joint Policy Efforts

 

Who is an advocate?

Someone who:

• Speaks in favor of or recommends a position
• Supports or defends a cause
• Argues for or pleads on another's behalf.

Advocacy is:

• Empowering, providing a sense of control
• Connecting to an understanding community
• Learning about issues that can make a difference.

 

CONTINUUM OF PEDIATRIC CANCER ADVOCACY OPPORTUNITIES

 

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While it is important to travel to Washington, D.C. to meet with elected officials and other advocates in the cancer community, it is equally important to continue that advocacy while at home. When Congress is in session, members and their staff can be very busy. During recess, the time when members are back in their home states and districts, constituents have a greater chance of meeting with their members. This also allows you to invite officials for a site visit, which can be a very powerful tool when advocating for quality cancer care. This section offers tips on how to create advocacy opportunities in your community and with your elected officials.

 

Local Advocacy

Often it is easier to contact members of Congress and their staff while they are in the home district, rather than making the trip to Washington, DC. You can arrange to meet your legislator in the local district office, attend town meetings held by the representative, or invite him or her to events convened by your organization. The following are additional tips for local meetings:

• Meet with your Member of Congress in his/her local office. The process for requesting a meeting is the same for the member's local and DC office.
• Attend town meetings held by your Member of Congress. Such events can provide an opportunity for you to publicly express the concerns of the childhood cancer survivorship community. If appropriate, introduce yourself to the legislator. You can then follow up this introduction by scheduling a meeting with the Member or staff.

Along with creating and maintaining your relationships with your Members of Congress, there are other options for strengthening your advocacy efforts.

 

Building Coalitions

When possible, work together with other organizations with shared policy objectives. There are numerous ways to form coalitions; think creatively in initializing joint policy initiatives in your own community.

 

Potential Allies

Depending on the issue you are addressing, potential advocacy partners include the following:

• Others in the Cancer Community: When addressing cancer-specific policies as well as broader health-related issues, try to present a united voice with other organizations in your cancer community. Potential allies include patient organizations, state and regional oncology societies, nurses, social workers, and cancer centers.
• Non-Cancer Patient Groups: If you are advocating for broad health issues, such as insurance reform, you can form alliances with organizations and individuals advocating on behalf of other medical conditions, in particular those that are serious and life-threatening.
• Other Consumer Groups: Advocates for the elderly, minorities and other consumers may also serve as allies in promoting better health coverage.
• Government Officials: Try to identify government officials - at the local, state, or federal level - who are sympathetic to your issue and develop a working relationship with them.

Joint Policy Efforts

Once you identify potential allies to work with, there are a number of policy activities you can undertake:

• Joint Letters: Write letters to key policymakers regarding issues of concern which can be signed by a variety of interested parties.
• Collective meetings with policy makers: Along with representatives of other organizations, meet with legislators or other government officials concerning shared policy recommendations.
• Share information: Share information with other interested groups regarding recent developments -- e.g., new legislation or proposed regulation or upcoming town meetings with your Member of Congress.
• Generate media coverage: Work together in generating stories about the concerns of cancer survivors and share them with your local media. Sign joint letters to the editor of your newspaper regarding current policy issues.

For more about the legislative process and being an advocate to Members of Congress, read on...

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CFC No. 71422