Every day we cancer survivors see news that could have an impact on cancer treatments, cost and access to health care and our rights as patients. So its only natural for cancer survivors to become advocates in the arenas of public policy, research and cancer care delivery.
Advocacy is a hard, sometimes thankless job, but getting involved is very rewarding. Follow me below for some tips and resources.
Ok, my apologies, but due to errors most of this diary was deleted.
In the interests of time, I'm just going to list some good resources for getting involved in cancer advocacy. Note of caution - dig for details; groups promoting a legislative agenda should provide links to actual bills, or sample legislation, or have a detailed public policy statement about priorities.
Legislative Advocacy
National Breast Cancer Coalition - the best and most influential cancer survivor advocacy group in the U.S. They are cancer survivors working to educate other cancer survivors to advance a substantive agenda. They've even set a Deadline of January 1, 2020. Lots of tools, stats, training, and policy analysis at their web site. Take advantage of it, even if you're not a breast cancer survivor. Their agenda usually impacts other cancers as well.
American Cancer Society Advocates on behalf of all cancers. Not a strong or heavily patient-centered agenda. It focuses on generic increases in cancer research funding, promoting cancer screening and funding of smoking cessation programs. Anyone interested in working with them should seriously consider pushing them to promote a stronger agenda.
LiveStrong Lance Armstrong's group is actually pretty good, though they've been less visible in recent years. They focus on issues related to survivorship.
Breast Cancer Action Their agenda complements NBCC's. Their primary advocacy focus is on issues related to environmental toxins. They do good work, too, are very vocal.
Living Beyond Breast Cancer
Young Survival Coalition
Feel free to add others you've discovered....
Get involved, attend conferences and sign up for a local grassroots network. Call your members of Congress, the White House, and sign petitions!
Plan to spend at least a couple of hours a week on sending emails, going to events, making calls, etc. It really is important.
Sorry for the delay in losing the first diary. I'm such a klutz. I'll answer questions in the comments below and will post my Research Advocacy diary tomorrow.
Update: I've added some links for research advocacy in the comments below