"Please don’t feel so shy, my Melissa." Afraid to leave the secure space between the hallway and her room, this was the last vivid memory I have of my mother, lying and dying of breast cancer on her remote controlled, special-delivery bed. Although I was seven when she died, this picture is one of the sole memories I hold of my mother in my mind. Yet, in my body, I remember all of her. I feel her viscerally. She is in my laugh, peering through my experiences of motherhood.
Today my mother might still be alive. At the age of 41, I have lived 5 years longer in this world than my mother. In the 34 years since her passing, I have witnessed the profound discovery and progression of breast cancer research and treatment.
Gone are the days when women suffered through radical mastectomies, axillary node dissections and highly emetogenic chemotherapy. Breast cancers, while still a frightening experience of diagnosis, treatment, and survivorship, can be a largely treatable and often curable condition. Therapy options are abundant. The advent of high-risk prevention, sentinel node biopsies, nipple and skin-sparing mastectomies, targeted therapies and supportive therapy for side effects have largely changed the landscape of breast cancer experience in the current day.
However, these advancements remain unavailable to too many women. So, as an oncology nurse working with underserved breast cancer survivors, my first thoughts about the cancer experience are not of my mother, nor of the major medical breakthroughs in diagnosis and treatment. When I think of breast cancer today, I consider the massive inequities in care.
I think of how Black women with breast cancer are 42% more likely to die from their disease. I think of all the women, and men, who are unable to receive the same type of care available to those with financial, educational, cultural and social means.
Yet, we have some of the remedies, such as culturally sensitive patient navigation, right in front of us.
Patient navigation, as a community sensitive approach, is a means to straddle the divide between social and medical health care. It promotes health care equity across all women and men with breast cancer. The data almost unilaterally support these findings. In fact, after the implementation of Dr. Harold Friedman’s first community navigation program in 1990, 5-year survival rates among poor women in Harlem, New York, increased from 37% to 70%.
I think of Zhonnet, a socially and culturally compassionate patient navigator who has made massive inroads in improving the care of underserved women with cancer. Zenobia has the gift of language and the gift of citizenship in the community she serves. She explains “cancer isn’t the only thing that happened to my patients, sometimes it’s just the latest.” Many of her patients are homeless or are on the verge of homelessness, in low paying jobs, victims of domestic violence, or are themselves caretakers with significant responsibilities. Zenobia knows that she needs to address these challenges before she can truly engage patients in their cancer treatment. She isn’t there to navigate cancer, she is there to navigate life.
And, yet, patient navigation, as a solution to mitigate disparities in care is at risk for extinction. It is undervalued, underfunded and often under-appreciated. Services of patient navigators are stuck behind the wall of health care bureaucracy with its inherent racial and class biases so that there are no systematic means to value or reimburse services for lay navigators. The majority of community navigation programs rely on limited grant funding, with an inherent end date in sight.
Within the current medical model of care and reimbursement, health care delivery is too often missing the social and cultural sensitivity necessary to provide practical solutions for vulnerable patients whose needs are often not addressed by traditional healthcare. Translation of scientific and clinical treatments into effective care for underserved patients requires an investment in community navigation. Ultimately, these efforts will help underserved cancer survivors, reduce disparities and increase trust that our health system exists for everyone.