Presentation by Debbie Denardi, Patient Advocate with FORCE
At the 2023 Community Oncology Educational Dinner Series (COEDS) Conference held in Fort Lauderdale Florida, Patient Advocate Debbie Denardi from FORCE (Facing Hereditary Cancer Empowered) discussed her journey through cancer and the role of patient advocacy in breast cancer.
Denardi noted that FORCE helped her when she was diagnosed with BRCA1-mutated triple-negative breast cancer (TNBC), a type of breast cancer that lacks expression of the estrogen receptor (ER), progesterone receptor (PR) and human epidermal growth factor receptor 2 (HER2). She noted that FORCE was a key factor in educating and informing her through her journey with her BRCA1 mutation diagnosis. The purpose of her presentation was to tell her breast cancer story, share her journey through breast cancer advocacy over the past 10 to 12 years and provide listeners with resources for advocacy and support.
Denardi spoke of her mother, who was diagnosed with breast cancer at the early age of 39 and died at the age of 44 after surgery and radiation therapy, and three of her mother’s sisters who died from cancer—two of them at an early age from breast cancer and a third from ovarian cancer. Denardi’s father died from prostate cancer; his father died of colon cancer. Her own medical history was notable. She developed fibroadenomas at age 31, basal cell carcinoma at age 35 and developed intestinal polyps when she was 36. Despite her strong family history of cancer, Denardi was unaware of her hereditary cancer risk. She had never been offered genetic testing to identify any relevant hereditary association, until her subsequent breast cancer diagnosis. In 2009, after a “clean” mammography screening just four months earlier, she detected a lump in her breast, and based on the biopsy, a lumpectomy was recommended. The tumor was TNBC and with that result and the family history, her oncologist recommended genetic testing. The result of the blood genetic testing came back with a BRCA1 mutation. Due to this mutation, a double mastectomy with hysterectomy was recommended based on her high risk for both breast cancer and ovarian cancer. Denardi’s only sister also tested positive for a BRCA1 mutation. Denardi’s mission now is to help others with BRCA1/2 or other familial, high-risk gene mutations to recognize their risk, understand options for early surveillance and treatment, and/or help limit the cancer risk to them and especially to their children, who may also carry their parent’s mutation.
What is a Patient Advocate?
Denardi explained that the definition of patient advocacy has expanded over the years; it now encompasses multiple domains in cancer survivorship, including research, support, education and policy. Organizations such as FORCE help to support cancer patients with emotional, medical, legal and financial assistance. Advocacy organizations also offer educational resources that help patients navigate a cancer diagnosis. From the policy perspective, patients are also able to influence policy-making government officials, advocate for increases in cancer research funding and foster improvements in our healthcare system. From the research perspective, patients can also utilize their individual experiences to help better inform scientific researchers and refine research processes. Denardi noted that her experiences with cancer research were particularly important and rewarding, as researchers often never meet the cancer patients who benefit from their research.
What Do Cancer Advocates Do?
Denardi mentioned some of the most important activities in cancer advocacy: attendance at major national meetings, such as the San Antonio Breast Cancer Symposium (SABCS) and the American Society for Clinical Oncology (ASCO) Annual Meeting; advocacy programs at major meetings; and local events such as “Day of Caring” and Empower, a Total Health Oncology program. Advocacy programs also provide the opportunity for patients to share their personal stories of survivorship, raise awareness and education about hereditary cancers and provide peer support. Activities also include participation in cancer-specific science training and education programs such as Project LEAD, which enables advocates to more fully understand the science behind the research when reviewing grant proposals. Participation in similar programs also helps advocates to better represent the patient's voice in clinical trials and research. For example, Denardi is a patient reviewer for research grant proposals for the Department of Defense and the Susan G. Komen Foundation. Another program, Guiding Researchers and Advocates to Scientific Partnerships (GRASP), connects researchers with patient advocates. During those meetings, researchers and patient advocates discuss how to hasten progress to improve treatments and end cancer.
Other areas where patient advocates can have a voice in policy include state advocacy organizations, such as the Florida Breast Cancer Foundation (FBCF); FORCE (Facing Hereditary Cancer Empowered); and the American Cancer Society Cancer Action Network (ACS CAN). Denardi has participated in several initiatives, including advocating for insurance coverage for biomarker testing in cancer patients and expanding insurance coverage to include diagnostic screening, which unlike mammography and other initial cancer screenings, is not completely covered and may have high out-of-pocket patient co-pays. Denardi noted that some advocacy programs at the national level have played a significant role in important initiatives, including insurance coverage for cancer survivorship programs, expanding Medicare coverage for genetic testing in patients who do not yet have cancer, and the Genetic Information Non-Discrimination Act (GINA), which prohibits insurance companies and employers from discriminating against individuals based on genetic predisposition.
Denardi summarized by noting that both researchers and patients can mutually benefit from patient advocacy. For researchers, patient participation gives a sense of meaning and purpose to cancer research—"a human face behind the research”—helps to make their research more clinically relevant and fundable and inspires more young people to pursue research careers. For patients, she noted that advocacy can provide a sense of meaning and purpose for patients’ cancer journeys and hope for living longer and better with their disease. It also gives the patient a voice in clinical research and provides important information about the impact of cancer treatment. She encouraged both patients and clinicians in the audience to consider participation in cancer advocacy programs.