About Patient Advocacy in Breast Cancer: 2023 COEDS Ft. Lauderdale Conference
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.
Ms Denardi noted that FORCE was the organization that helped her when she was diagnosed with BRCA1-mutated “triple-negative” breast cancer (TNBC), which refers to 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 1) tell her breast cancer story, 2) to share her journey through breast cancer advocacy over the past 10 to 12 years, and 3) to provide listeners with resources for advocacy and support.
She related the story of her mother being diagnosed with breast cancer at the early age of 39 and dying at the age of 44 years, after surgical and radiotherapy treatment, and three of her mother’s sisters dying from cancer, 2 at an early age from breast cancer, and a third from ovarian cancer. Moreover, Ms Denardi’s father was diagnosed and died with prostate cancer and his father had died of colon cancer. Ms Denardi’s medical history was also notable for fibroadenomas starting at age 31, basal cell carcinoma at 35 years, and intestinal polyps at 36 years. As such, her family history was very notable for cancers, and despite this, she was completely unaware of the hereditary cancer risk, and had never been offered any genetic testing to determine a relevant hereditary association. It was only until her subsequent breast cancer diagnosis that she was told she qualified for genetic testing. She noted that, 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. On further biopsy of the lumpectomy, a double mastectomy with hysterectomy was recommended based on her high risk for both breast cancer and ovarian cancer; both she and her only sister tested positive for the cancer predisposing BRCA1 mutation. Ms Denardi related that it has become her mission to help others like her with BRCA1/2 or other familial cancer mutations to recognize their risk, and educate them so they can have additional treatment options, be diagnosed earlier, and/or help limit the cancer risk both to them and especially to their children, who may also carry the mutations.
What is a Patient Advocate?
Ms Denardi explained that the definition of patient advocacy has expanded over the years, and now encompasses multiple domains in cancer survivorship, including research, support, education and policy. Organizations such as FORCE first help to support cancer patients with emotional, medical, legal and financial assistance. Advocacy organizations also offer educational resources that help patients to navigate through 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. Ms Denardi noted that her experiences with cancer research were particularly important and rewarding, as often researchers have never met the cancer patients who actually benefit from their research.
What Do Cancer Advocates Do?
Some of the most important activities in cancer advocacy that Ms Denardi mentioned were 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 give patients the opportunity to share their personal stories of survivorship, to raise awareness and education about hereditary cancers, and to 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 programs such as these also helps advocates to better represent the patient voice in clinical trials and research. For example, Ms Denardi is a patient reviewer for research grant proposals for the Department of Defense and the Susan G. Komen Foundation. Another program called GRASP, connects researchers with patient advocates. During those meetings, researchers and patient advocates discuss how to make faster 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). Some of the initiatives Ms Denardi has personally participated in include advocating for insurance coverage for biomarker testing in cancer patients, and expanding insurance coverage to include diagnostic screening, which (unlike initial cancer screenings like mammography) is not completely covered, and may have high out of pocket co-pays for the patient. Ms Denardi noted, at the national level, some of the important initiatives where advocacy programs have played a big role include 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.
Summarizing, Ms Denardi noted 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 give patients a sense of meaning and purpose for their cancer journey, as well as 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 for patients. She encouraged both patients and clinicians in the audience to consider participation in cancer advocacy programs.
Quick Summary
Patient advocacy organizations can help navigate patients through the many challenges of a cancer diagnosis.
By becoming a patient advocate, you can better understand your cancer and the clinical research behind your cancer treatment.
Patient advocates can help clinical researchers by providing a “patient voice” and patient perspectives in cancer research.
Patient advocates can also impact important state and national policy initiatives and decisions related to cancer treatment and healthcare in cancer.
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