by Melanie Nix
I know a woman who has hereditary breast and ovarian cancer (HBOC) syndrome. She is a triple negative breast cancer survivor. She has a BRCA1 gene mutation and is the fifth generation in her family to have breast cancer. She lost her youngest aunt to ovarian cancer after multiple battles with both breast and ovarian cancer. She herself was diagnosed with breast cancer at 38, the married mother of a one-year-old daughter and four-year-old son. Given her family history of breast cancer, she opted for treatment as well as prevention. Treatment included a left breast mastectomy to remove the cancerous tumor and 16 cycles of chemotherapy. Prevention included a prophylactic mastectomy to remove her right breast and a prophylactic bilateral salpingo-oophorectomy. After almost 12 months of treatment and prevention as well as reconstructive surgery, she was moved to the lifetime follow-up care of her oncologist.
I know this woman’s story so intimately because this woman is me. It’s been eight years since my diagnosis and I hope that I have a lot of years in front of me. During this season of intense and often fractious health care review, it is increasingly important to ensure that our legislators know our stories as they manage a potentially uncertain healthcare landscape. The issues aren’t partisan, they are personal. It is critical that they understand the impact their decisions have on their constituents.
In the mornings and evenings when I watch the news and read the headlines, by the time I’ve finished, the news is almost obsolete. In our current news cycle, minutes and hours now define “old” news. It can be difficult to stay abreast of all the local, state and national media reports and determine what new health care provision is currently being proposed or debated. There is a big question mark regarding the future of healthcare. One thing is certain, my life will be affected by any changes. Here are some key things that I’ve learned during this ongoing healthcare debate.
- Tell your healthcare story. Make sure you provide an introduction and engage in a “conversation” with your legislators. Stay in their ear so they can recall details of your story as they review health care to ensure thoughtful and informed deliberations and decisions.
- Identify and understand the health care issues that are critical to you. For example, no coverage discrimination for preexisting conditions is critical for me. Others include coverage of screening and preventive services and no lifetime dollar caps. A useful resource for sorting through this information in the advocacy section on the FORCE website. FORCE’s XRAYS program is a reliable resource for navigating breast cancer research related news.
- Always be your best advocate and raise your individual and collective voice to amplify your story. FORCE is a great advocacy voice.
As the debate and uncertainty continue, let’s make sure our voices are heard. We can certainly help drive outcomes that are not partisan but fueled by a patient (constituent) focus.
MELANIE A. NIX is co-founder of the Breast Cancer Comfort Site. A health and wellness advocate, she is a member of the ABOUT Network Steering Committee. A married mother of two, she holds a BA from the University of Virginia, and MBA from the Robert H. Smith School of Business.Tags: brca, BRCA 1, brca research, BRCA1, BRCA2, breast cancer prevention, genetic testing, HBOC, health policy, hereditary cancer, patient advocacy, personalized medicine