Like many other Millenials who grew up in the age of Lara Croft and Brangelina, I greeted Angelina Jolie’s announcement that she had undergone a preventative mastectomy and reconstruction last month with sadness for her loss and admiration for her heroic decision and very public disclosure. I hope her story will lead other women to undergo screening and potentially save lives, but real improvement in women’s health outcomes requires much more than celebrity disclosure. We need a fundamental shift in the way providers approach their patients and gain access to their narratives.
The truth is that Jolie suffers from a rare genetic defect that only accounts for 5-10 % of breast cancers and 10-15% of ovarian cancers in the US. She also had access to exceptional care that allowed her to undergo testing to identify her risk in the first place. The genetic testing she underwent alone costs over $3,000. The Affordable Care Act contains provisions that require private insurers to cover genetic counseling, and if appropriate, BRCA testing without a co-payment. Mastectomy and reconstruction, however, still cost thousands more.
Research shows that women of color are disproportionately less likely to have access to surgical care and that black and Latina women are less likely than their white counterparts to even be offered reconstructive surgery as an option.
The reality is that the the majority of breast cancers are not linked to a specific gene and require screening with traditional mammography techniques. Unlike Jolie, most women of color can’t access or afford the testing or preventive care she received. In America today, white women are most likely to receive a diagnosis of breast cancer, Asian women are least likely to be screened for it, and black women are most likely to die from it. Though millions of charitable dollars have been spent raising awareness for breast cancer, we have yet to find ways to ensure equitable health access for all.
What’s more, black women suffer disproportionately higher rates of “triple negative” breast cancers, meaning that it is resistant to traditional chemotherapy and radiation regimens and is also the most aggressive, spreading rapidly and killing at a younger age. Unfortunately, these trends of inequity extend well beyond breast cancer to other diseases that affect women of color.
In my own community, information regarding the health of South Asian women in the United States is almost impossible to come by. What little data exists suggest that South Asian women are screened for breast cancer and cervical cancer at lower rates than their white, black or Latina counterparts. Information on other crucial illnesses like heart disease, diabetes, infertility and mental health is woefully lacking. Epidemiologic research into disparities existing for women of color often identifies key predictors and factors that lead to increasing morbidity and mortality; in the case of South Asian women, contacts with health professionals, country of origin, years spent in the United States and education level all seem to be important factors in whether or not a women seeks care.
The epidemiologic data makes it clear; there is no doubt that health inequities exist for women of color. In fact, physicians and researchers have spent decades documenting and detailing the origins of these disparities, but when it comes to taking action, our society has fallen short. A recent New York Times article details this disturbing trend in the “Feel Good War on Breast Cancer.” The author, a breast cancer survivor herself, points out that we’ve spent decades and billions of dollars on raising awareness and building screening programs and comparatively little on research to find targeted therapies for things like “triple-negative” cancer, which causes nearly 1 in 5 breast cancers today.
Startlingly, we spend even less time and money on building partnerships and making inroads into communities of color to make sure women actually have contact with providers and access not only to screening, but to early and ongoing treatment. In medical schools around the country, students learn to make quick mental associations like “black people and heart disease” or “Native Americans and diabetes,” but current curricula fail to prepare physicians to delve deeply into their patients’ lives and identify the cultural and social barriers patients often face as they seek care.
As a student, I have had the privilege of hearing some of the finest minds in the country talk about these difficult issues and had lengthy debates with brilliant classmates. And yet, as we document, collect, campaign and raise awareness, I worry that we are falling disappointingly short.
In the past year, I have been inspired and touched by the personal stories of my colleague and friend, Valarie Kaur, who, like Jolie, has bravely come forward in hope of helping others like them who are suffering in silence by sharing her own personal struggle with endometriosis and calling for others to break their silence. Their voices are a rallying cry; but nothing will change unless it is followed by action. That change will require action on the part of dedicated health care professionals and a fundamental change to the way we approach health care, especially in communities of color.
This week, over 17,000 graduates will receive their M.D. degree and take their place in the world of medicine. I hope that as I join their ranks and our profession moves forward, we find ways to move out of the paradigm of simply categorizing and identifying women of color as a disparate minority and instead learn to work with communities to build trust, partnership, and ultimately, healing.
Sindhura Kodali is a medical student and an intern at the Groundswell Movement.