Individual advocacy

Individual advocacy means being able to stick up for yourself in order to get what you need for the rest of your life. You need to learn how to work within the system to get the best healthcare, an appropriate education, and a job without discrimination based on your cancer history.

Obtain detailed medical records of your cancer treatment. The first step in being the best advocate for you or your child, is to obtain the medical details of your/your child’s cancer history and treatment, and educate yourself about the risks and possible late-effects to expect from that type of treatment, continuous tests and monitoring that is necessary, and where to access these resources.

Because knowledge and studies regarding late-effects of treatment and cancer survivorship are growing daily, you should be seen at least yearly by a healthcare provider (preferably in a survivorship clinic) who keeps updated on the latest studies, research and information or by a provider who is in close communication with a survivorship expert. You should remain active in your follow-up care, especially since other symptoms may develop over time.

It can be a heavy load to be an advocate in the healthcare system, school, and community. However, much satisfaction can result. The following is a list of activities you and/or your family can do to advocate for improvements.

Advocacy Activities:

• Obtain copies of your records and/or treatment summary in order to advocate for your future healthcare.

• Work with the school to get your child an IEP or 504 Plan to get the best possible education.

• Register with the office for students with disabilities at the college or university.

• Challenge rules that restrict the options of survivors.

• Volunteer to staff a local organization’s cancer information line.

• Start a support group in your community or hospital.

• Talk to local civic groups about your experience.

• Write letters to newspapers, magazines, or politicians about survivorship issues.

• Share your experience with the media or legislatures to help shape public opinion or policies about cancer.

• Become a counselor at a camp for children with cancer.

• Offer to be a support person for newly diagnosed families.

• Join or start committees to effect changes at your hospital.

• Donate to groups that lobby for survivors.

• Help fundraise to start or sustain a comprehensive follow-up clinic.

• Participate in follow-up studies that may be available through a comprehensive follow-up clinic. Information from these studies can have impact through publications, media attention, and public policy change.

• Tell your friends and family your feelings about your cancer journey.

Advocacy is not for everyone. Sometimes survivors just want to carry on with their lives. Over time, you may have greater or lesser interest in your cancer history.

Group advocacy and networking

Networking with other survivors and advocating for change will help survivors following in your footsteps. Group advocacy can be very effective in encouraging and creating change at the community, state, or national levels. Issues that can be addressed are national funding (e.g., increased monies needed for late effects research), institutional funding (e.g., starting and supporting comprehensive follow-up clinics), political changes (e.g., improving anti-discrimination laws), federal and state programs (e.g., improving insurance options for survivors), and hundreds of others.

Group advocacy opportunities. The following are some of the ways for groups to effect changes.

• Start an online support group.

• Organize a conference at a treating facility to educate caregivers about survivorship issues.

• Lobby an institution to provide comprehensive services for survivors.

• Attend local, state, or national gatherings of survivors.

• Encourage family and friends to create or join committees that work for survivor issues.