This post by advocate and Support Volunteer Dee Sparacio, originally appeared on SHARE Cancer Support‘s blog. We are delighted to share it with you.
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Through the years I have worked as a chemical engineer, packaging engineer, and high school computer science and math teacher. When I was diagnosed with Ovarian Cancer in 2005, I did not realize that I would “work” as an advocate longer than I held any of those positions.
During the spring of 2006, I had just finished my 9th cycle of chemotherapy for stage 3b high-grade serous epithelial ovarian cancer. I had a conversation with my gynecologic oncologist about how my insurance company had denied payment of my PET scan even though that test had determined the spot on my liver was not cancer and I could stop chemotherapy. She informed me that there could be a way to change similar situations for all patients and continued to share how I should apply to attend the Lance Armstrong Foundation’s (currently the LiveSTRONG Foundation) Survivors Summit in Austin, Texas in October. I applied, was accepted and made the trip to Austin. I met many amazing cancer advocates from around the country, and together we worked in groups to develop solutions to problems a cancer patient/survivor experiences. I learned the skills to create an action plan and how to advocate for myself.
In 2007, I attended LiveSTRONG Day in Washington, DC. Delegates from each state received advocate training. We learned how bills were passed and the importance of increased funding for the National Cancer Institute and Centers for Disease Control. In addition, we used this as an opportunity to practice what we would say when we met our state Senators and Congressmen before we visited our representatives’ offices.
I have continued to build on that initial training and share my story in countless ways, in person and via various social media platforms. I co-authored a book, attended medical conferences, spoke at a conference in Portugal, been a patient representative on a Clinical Guideline Panel, and co-founded a cancer community on Twitter (#gyncsm- gynecologic cancer social media).
But you don’t have to travel and take formal training to become an advocate. The first step is to decide what type of advocate you want to become.
Do you want to be an advocate for yourself? This a great place to start. Learn about your disease. Be sure to use reliable resources like those that SHARE Cancer Support offers as well as those provided by the National Cancer Institute, the American Cancer Society, and the American Society of Clinical Oncology‘s Cancer.Net. The more you know, the more you will feel comfortable asking questions and discussing treatments and tests with your health care professionals.
You can also choose to advocate for others. Caregivers can help advocate for their loved ones diagnosed with cancer, as well as for other caregivers. We who have been through diagnosis, treatment, and follow-up care can support those who are newly diagnosed.
How do you do this? Become a volunteer for an organization like SHARE, OCRFA (Ovarian Cancer Research Fund Alliance), or a local breast or ovarian cancer organization. You can attend events, help at health fairs, hang awareness ribbons, participate in social media and share your story with others to raise awareness.
You can also be a legislative advocate on the state and federal level, supporting legislation that can improve the care of cancer patients and survivors. Many organizations, like OCRFA, have online systems that will notify you via e-mail when votes for appropriation or related bills are occurring. They also have online forms to send e-mails to your Senator or Congressman with text you can edit to share a bit about your personal story.
On the state level you can reach out to your local representatives to support a bill or ask them to introduce a bill to improve care for cancer patients. Search online for your state’s legislation page. If it is anything like my state’s (New Jersey) page, you will find on the home page a way to search for bills in the current session. Search using keywords, such as ovarian cancer, cancer or breast cancer. If you want to show support for a bill, contact the representative from your district via e-mail or phone. Tell them you are a constituent and why they should support or not support a bill.
Lastly, you can be a cancer research advocate. I follow new developments in ovarian cancer research shared online by the NCI and FDA as well as SHARE, OCRFA, NOCC (National Ovarian Cancer Coalition) and the websites of many of the NCI Comprehensive Cancer Centers. I chose those websites because they offer accurate and timely information. I also follow on Twitter the annual meetings of organizations such ASCO (American Society of Clinical Oncology), SGO (Society of Gynecologic Oncology) and AACR (American Association of Cancer Research) and use social media (@womenofteal, womenofteal.blogspot.com) to share news with my followers. I read Cure Magazine, Cancer Today Magazine, and Coping Magazine as well as the SHARE newsletter. Having access to the latest news will allow you to better support the need for increased funding for cancer research and to help other women who may be looking for other treatments or clinical trials. As a research advocate, you may have opportunities to attend medical conferences. Sharing your experiences with researchers assures everyone that the needs of patients, and survivors is at the center of research studies and their outcomes.
If you want more formal training in research advocacy, you may sign up to be a research advocate with OCRFA or the Research Advocacy Network.
It was my gynecologic oncologist who planted the advocacy seed for me, and it has blossomed to enrich my life by forming friendships with cancer researchers and others diagnosed with ovarian cancer. Will you add your voice to mine?
Dorinda “Dee” Sparacio is an ovarian cancer advocate, author, blogger at Women of Teal, and co-moderator of Twitter’s