“Of all the forms of inequality,” Reverend Martin Luther King Jr said, “injustice in healthcare is the most shocking and inhumane.” As we honor black history this month, it’s important that we reflect on this fundamental truth, and ask why this injustice still plagues us more than half a century later, and what we can do to finally rectify it.
Thanks to advances in prevention, early diagnosis, and treatment, we have seen steady improvements in cancer prevention and care. But the benefits and promise of these breakthroughs, including those of genetic testing, are still failing to reach too many in underserved communities.
African-Americans still have the highest death rate and shortest survival of any racial or ethnic group in the United States. African-American women are more likely to develop aggressive breast cancers, and are a shocking 40 percent more likely to die from the disease. In fact, in recent years the five-year survival disparity for breast cancer between white and African-American women has actually widened; today it’s 92 percent for white women, but only 79 percent for African-American women.
Later detection, inequities in access to care, and poorer stage-specific survival are root causes of this disparity. Our experience shows recent improvements in genetic testing could help ameliorate all three deficits — or further widen the gap if they remain unequally available.
In 2017, genetic testing to understand your risk for hereditary conditions like cancer and heart disease became more affordable and accessible than ever before. Just five years ago, if you wanted to test your BRCA genes, whose mutations can greatly increase risk for breast and ovarian cancer, the procedure would require multiple appointments and cost thousands of dollars. Today it costs less than a hundred dollars and requires only an at-home saliva sample.
Learning your genetic risk early enough allows you to take action that could prevent these conditions, or diagnose them earlier at a much more treatable stage, leading to longer, healthier lives and lower treatment costs. For every stage breast cancer is diagnosed earlier, the survival rate increases by 50 percent and treatment costs drop by 30 percent — a potentially crucial source of savings in a country that spent more than $3 trillion on healthcare in 2016.
Genetic testing, in other words, can save both lives and money. But genomic research and the accessibility of testing remain heavily tilted away from minority communities; 80 percent of people whose DNA has been analyzed in scientific research on genetic variants linked to disease are of European descent. Fortunately, efforts are underway to close this genetic equity gap. The UCSF Population Health and Cancer Testing (PHACT) initiative, for instance, recently recruited 500 African-American, Latino and Asian participants in order to study how genetics impact cancer risk in different populations.
Together, Color Genomics and the Morehouse School of Medicine have worked alongside other top research institutions and clinics through the Color For All program that seeks to ensure that genetic testing is available to everyone, regardless of their financial situation. Morehouse’s Health Cancer Health Equity Institute is also conducting laboratory, clinical, and population-based research to better understand, and reduce, cancer health disparities. And its Mobile Clinical Research Unit will aim to bring services and research into the neighborhoods that need them most.
These are all steps in the right direction, but there is much more work to be done. Every healthcare organization, institution and entity must redouble its commitment to expanding research on underserved populations and ensuring these communities’ access to healthcare’s genomics-based future. Let’s make 2018 the year we finally confront the wrong that Dr. King addressed so long ago — and start to set it right.
Dr. Valerie Montgomery Rice is president and dean of the Morehouse School of Medicine. Othman Laraki is co-founder of Color Genomics, a genetics testing company.