Paula Schneider, President and Chief Executive Officer, Susan G. Komen
Fifteen years ago, I heard the words no one wants to hear—I had breast cancer. Even so, I was lucky in that I had comprehensive health insurance, access to some of the best doctors, and could afford out-of-pocket costs. At Susan G. Komen, we know that not everyone is as fortunate.
Disparities
While there has been tremendous progress in treating breast cancer, there is no denying that this progress has not benefited everyone equally. In the United States, Black women are about 40 percent more likely to die from breast cancer than white women. In some communities, the disparity is even greater. In Memphis, Black women are 70 percent more likely to die from breast cancer than their white counterparts, and in Washington, D.C., the gap is over 50 percent. Part of this disparity can be ascribed to genetics. Black women are often diagnosed at a younger age and suffer more aggressive breast cancers. However, much of this difference is due to more complex issues of systemic racism and bias that result in Black women being diagnosed at later stages of disease, when treatments are limited and costly, and the prognosis poor.
Too often, the conversation about saving lives from breast cancer begins and ends with access to screening. Yet in many communities, Black women are more likely to be screened than white women and are still more likely to die from the disease. This is because—while access to screening is important—access to quality care and to a full continuum of care is more important. And the tragic fact is that Black women are more likely to face barriers to care and to receive care that is below the quality standard.
This disparity is not limited to breast cancer. Every health-related crisis in the U.S. has put disparities into focus—recall the AIDS epidemic of the 1980s, or the aftermath of Hurricane Katrina in 2005—when impacted Black communities faced the additional indignity of being unable to access necessary health care. Over the past year, the U.S. Centers for Disease Control and Prevention (CDC) reports that Black men and women have been disproportionately affected by the coronavirus pandemic. These statistics are not just numbers—they represent our families and friends. Each statistic represents a person who deserves a chance to live longer and with a high quality of life.
According to Komen’s scientific advisors, as many as one third of the 44,000 people in the U.S. expected to die from breast cancer this year could be saved without a single new medical breakthrough. These people are dying because they cannot access care in time and because the care they ultimately receive is not of equitable quality. Many do not have adequate insurance or lack insurance altogether. Some delay care because they are afraid of the high cost of treatment or that they might lose their job if they take time off to seek care. At every step in the treatment journey, they encounter financial and systemic barriers.
Interventions
To achieve greater health equity, consider these key interventions:
- Invest in Research. Philanthropy can play an important role in investing in research to better understand the drivers of these disparities and the effectiveness of specific interventions.
- Advocate for Change. Currently, Congress is considering legislation that may eliminate barriers to care. A key proposal in this regard is the Improving Social Determinants of Health Act which, if passed, would create a program within the CDC to analyze the social factors that impact our health, including housing conditions, employment status, food security, environmental safety, educational opportunity and medical racism—and fund programs to address them.
- Take a Comprehensive Approach. In our work to achieve health equity, our goal to close the mortality gaps must take a comprehensive approach that includes meeting rigorous quality standards and improving access to screening, genetic testing and counseling, treatment, and clinical trials.
- Support People with Patient Navigators. Key to ensuring people stay within the continuum of care is increasing access to and the use of patient navigators, who can help patients make sense of a fragmented health care system during a time when little makes sense. Komen has partnered with the Fund II Foundation to close the breast cancer gap for Black women, starting with focused interventions in the ten cities where the disparities are the greatest. As part of this effort, Komen is hiring and training a patient navigator workforce that reflects the Black community, understands the barriers people face and where to find local resources. Patient navigators build trust, problem solve and address a comprehensive list of potential barriers—from transportation and food insecurity to childcare and other issues—and guide patients through timely follow up, diagnosis and treatment.
- Spread and Scale Effective Models. While the focus of our effort is on addressing disparities that exist for Black women with breast cancer, these interventions can be applied to tackle inequities in various communities, such as those who live in rural communities without convenient and reliable transportation to care and, as a result, must travel several hours each way to get to their treatment.
The tragic disparities in health care have been clear, but ignored, for generations. We look forward to working with philanthropy to address the problem. Together, we can ensure the promise of a world without breast cancer is extended to everyone.