“Is telling your story advocacy?” – it is a question we have raised before in this CKN Patient Advocacy Blog. This question has prompted a series of blogs profiling organizations that promote sharing one’s cancer narrative as a way to improve care for others.
Blue Faery: The Adrienne Wilson Liver Cancer Association is a nonprofit corporation whose mission is to prevent, treat and cure primary liver cancer, specifically Hepatocellular Carcinoma (HCC), through research, education and advocacy.
The founder is Andrea J. Wilson, and, like many patient advocates, she has her own story.
Andrea was only 22 when she became the legal guardian of her 8-year-old sister Adrienne. She navigated the joys and challenges of being both sister and parent to her beloved Adrienne who called her “Sissy.” But when Adrienne was diagnosed with HCC at 15, they both were catapulted into the foreign and confusing world of cancer. Andrea was shocked by how little information they were given, how limited the treatment options were, and how scarce patient support resources were. “We had no access to anything,” she remembers, “records, information, support – we were on our own.”
One year after Adrienne’s death, Andrea found herself drowning in a pool of grief. She thought volunteering for a liver cancer organization would help her. To her surprise, there was not a single charity devoted to fighting HCC in the United States. With little experience but lots of passion, she founded Blue Faery. The incorporation date of December 19, 2002, which is determined by the state, marked the eighth anniversary of Andrea receiving custody of Adrienne.
In addition to its work in developing patient education resources and encouraging research, it has a mandate for patient advocacy. Among its goals is to facilitate contact among patients with Hepatocellular Carcinoma, their families and healthcare providers for the purposes of support, exchange of knowledge and participation in clinical trials. Also, it offers the Adrienne Wilson Spirit Award (AWSA) for HCC patients “who share Adrienne’s spirit, strength and courage” – those that advocate for themselves as well as others.
But Andrea and Blue Faery go beyond recognizing patient advocates. They work at forming them. Via their online survey, patients are invited to tell their story for Blue Faery’s cancer patient advocacy ebook. Since cancer patients face many of the same issues, Andrea is working with current patients, survivors and caregivers to create guidelines to help newly diagnosed cancer patients. True stories will be used to illustrate specific points (e.g., get a second opinion). Though Andrea is creating the book, she feels it is written by patients for patients. Andrea’s favorite question to ask is, “What is the #1 thing you wish you had known about your illness/treatment that you want other patients to know?”
Andrea is taking on another challenge this year: educating the public on the causes, symptoms, treatment options and prevention of HCC by sharing Adrienne’s story in detail. On May 15, Andrea is introducing her unpublished memoir Better Off Bald: A Life in 147 Days as a video series and podcast. Andrea will tell the story in real time the way it happened to her and Adrienne 16 years ago. For example, Day 1 is May 16, 2001 and that episode will air on May 16, 2017. The serialized nonfiction podcast and video series will run until October 16, 2017.
Since Blue Faery was founded 14 years ago, Andrea has seen how patient connection with each other is the tinder that lights the fires of advocacy and change. In addition to the patient advocacy ebook and podcast/video series, Blue Faery is launching its online patient forum for HCC patients, survivors and caregivers this fall. You can sign up now by going to http://www.healthunlocked.com/bluefaerylivercancer/
Linking families together helps them underscore their common needs and aspirations. Once patients and families are in dialogue, advocacy arises as a natural next step. According to Andrea, “Numbers don’t cause change; personal narratives do. In the end, we all become stories.”
Adrienne would be so proud.
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 25 years. Since entering remission, 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. In 2015, she was awarded the Canadian Cancer Society’s highest honour, the National Medal of Courage. Robin was recently named the 2016 recipient of the Sovereign’s Medal for Volunteers from the Governor General of Canada. Her book The Cancer Olympics has won five literary awards, and was recently listedamong the best 55 self-published books of 2015 by Kirkus reviews. Proceeds of sales go to cancer support programs. The Cancer Olympics is McGee’s first – and hopefully her last – memoir about her cancer experiences.