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Is Telling Your Story Advocacy? The example of Fight CRC

RobinMcGeeby Dr. Robin McGee, CKN Editor

 

Throughout the cancer world, there are many opportunities for the individual patient or caregiver to get involved in advocacy.   But how does one find them?   How does one get started?  One of the functions of this blog is to inform patients about such opportunities to bring about system-wide improvement.

 

Fight CRC is an organization devoted to fighting colorectal cancer.  Being a CRC survivor, I am passionate about prevention and early detection.   I interviewed Emily Piekut, Advocacy Manager at Fight CRC, to learn about how that organization invites individuals to strive for change.  Her answers reveal a thoughtful and committed organizational framework that makes those first steps towards advocacy both simple and powerful.

 

  1. On your website, you have a place for patients, survivors and caregivers to post their story.  What is the process by which these stories are used for advocacy?

Our website has a “share your story” feature that we use as part of our awareness campaign, One Million Strong. Those stories are posted on our blog to raise awareness for colorectal cancer. Another way to share your story is through our advocacy portal when we have an action alert to email or call your members of Congress. We precompose an email or talking points for a call and prompt you to share your story as part of your advocacy “ask” to your members of Congress. Making a legislative issue or request personal by sharing your story is what will push Congress to increase funding for cancer research and remove barriers to colorectal cancer screenings.

 

  1. What are some ways your organization can direct or support a survivor that is interested in taking that first step into advocacy?

 

If you are interested in taking the first step into advocacy, as that you sign up on our website. The sign up form allows you to indicate your interests. We tailor our emails to you based on the things you want to hear about, from policy to research, to raising awareness. If you sign up and request advocacy information, you will receive policy updates and stories about fellow advocates as a part of our monthly Advocacy email. Plus, you’ll be the first to know when we need you to take action like signing a petition or emailing Congress.

 

  1. What are some of the key advocacy-requiring themes that arise from the stories you have collected?

 

Some of the issues we see over and over again are barriers to screening and the need for increases in research funding. One of our legislative asks is support for the Removing Barriers to Colorectal Cancer Screening Act (H.R. 1120/S. 624) which would eliminate a 20% co-pay Medicare beneficiaries are responsible for paying if polyps are removed during a screening colonoscopy. This is a huge screening deterrent and results in more late-stage diagnoses that could have been prevented all together. Increased funding for cancer research is an obvious need. In addition to funding clinical trials to develop innovative, new treatment options, we’d also like to see a focus on the rising incidence rates for the “under 50” population. In partnership with the Cancer Research Institute, Fight CRC convened a group of experts to write an immunotherapy blueprint. This blueprint is intended to help shape strategy for research in the immunotherapy arena.

 

  1. How can a survivor get involved in your Call-on Congress initiative?

 

That’s easy – register and attend! Call-on Congress is open to anyone who’s been touched by CRC. You’ll spend two empowering days learning about research and important policy issues and on the third day you go as a group to Capitol Hill where we set up meetings with your members of Congress. Call-on Congress 2017 is March 13-15 at Georgetown Conference Center and Hotel.This event is about advocacy, but it is extremely powerful to have a room full of survivors, caregivers and loved ones who want to make a difference. Registration will open in late October!

 

  1. How can a survivor get get involved in your Virtual Lobby Day?

 

Our virtual lobby day will take place on March 15, 2017 – the same day 125 advocates at Call-on Congress are meeting with their members on the Hill. Anyone can get involved online by signing up as an advocate.  In 2016 we partnered with the American Cancer Society Cancer Action Network and more than 10K advocates took action.  Sign up and we’ll send you an email when it’s time to take action!

 

  1. What is an example of a change you have seen as a result of patient lobbying?

 

Our advocates, and the cancer advocacy community as a whole, worked in both 2015 and 2016 to save research funding through the Department of Defense (DoD). The Peer Reviewed Research Program (PRCRP) funds innovative research specific to cancers affecting military members and their families. To fund research for a specific disease through this program, the disease must be relevant to the military and has to be specifically included as part of the PRCRP portion of the DoD appropriations bill. Colorectal, lung, breast, cervical, prostate, and pancreatic are all included in the program and affect members of the military and their families at a higher rate than other cancers. In 2015 and 2016 opposing members of Congress tried to restrict this funding in a way that would be detrimental – and both years our advocates rallied and won! Without their advocacy efforts, the PRCRP funding would have been nearly eliminated. Thanks to their hard work, the program still exists at a $50 million funding level.

 

Fight CRC creates the opportunity for sharing, and supports those interested in bringing the patient narrative to government.   Speaking truth to power is what advocacy is all about.  Fight CRC makes this easy, timely, and wise.

 


 

 

Dr. Robin McGee (The Cancer Olympics, Twitter @TCOrobin), is a Registered Clinical Psychologist, mother, wife, educator and friend. Living in Nova Scotia, she has worked in health and education settings for over 30 years.  She has been very active in advocacy, mentorship, and fundraising on behalf of cancer patients. In particular, she has been involved in provincial, national, and international initiatives aimed at improving standards of cancer care. She has been awarded the Canadian Cancer Society’s highest honour, the National Medal of Courage.  Robin was also decorated by the Governor General of Canada with the Sovereign’s Medal for Volunteers .  Her book The Cancer Olympics has won seven literary awards, and was listed among the best 55 self-published books of 2015.  Proceeds of sales go to cancer support programs. The Cancer Olympics is available from Amazon and Indigo.  She is currently in treatment for a recurrence of her colorectal cancer.

 


 

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