My first exposure to kidney disease and its effects on color communities was in high school. An elderly neighbor who was like a grandfather to me was diagnosed with kidney failure. Around the same time, my older first cousin, who had children my age, started dialysis for kidney failure caused by high blood pressure. She was going to have a kidney transplant. If you ask an African American, he or she likely has at least one relative with kidney disease that requires dialysis or a transplant.
Differences in kidney disease that were not noted in the medical literature until the early 1980s
When I began my nephrology (kidney disease) training in 1993 in Birmingham, Alabama, it was already clear to me that people of African descent suffer from kidney disease much more often than people of European descent. The dialysis units in Birmingham were filled with black and brown people of all ages and sometimes several family members. My patients in one of the dialysis units included an African American grandfather and grandson, an African American mother and daughter, and two African American sisters.
Nephrologists had anecdotally noted the striking differences in the rate of kidney disease in African Americans compared with white patients, but it was not fully reported in the medical literature until 1982 when a report entitled “Racial Differences in the Frequency of Treatment of End-Stage Kidneys” Disease ”was published in the New England Journal of Medicine. The authors found that in Jefferson County, Alabama, the risk of end-stage kidney disease due to high blood pressure was approximate 18 times bigger for African Americans relative to whites.
The underlying conditions do not adequately explain the differences
The explanations for the higher rates of kidney disease in African Americans generally fall into two broad categories: higher rates of diseases such as diabetes and high blood pressure that lead to kidney disease; and poor access to insurance and health care, leading to delayed diagnosis and faster progression of kidney disease. Therefore, efforts to reduce kidney disease in African Americans have typically focused on diagnosing and treating diabetes and high blood pressure.
Despite these efforts, the differences have continued. The latest report from the United States Renal Data Service shows a prevalence of end-stage kidney disease of 5,855 cases per million in African Americans, compared with 1,704 cases per million in white Americans.
Genetics and biology only play a subordinate role when there is excessive risk
2010 saw a shift in understanding of the excessive risk of kidney disease in African Americans as compared to other races and ethnic groups. The publication of reports showed that variants of the APOL1 gene could pose an additional risk. The inheritance of two copies of the APOL1 risk alleles carries a significantly higher risk of kidney disease. HIV-positive African Americans with two copies of the risk allele are essentially the only people who develop kidney disease associated with HIV infection. African Americans who develop COVID-19 and carry two of these risk alleles also appear to be at higher risk for acute kidney injury associated with coronavirus infection.
Just as the sickle cell gene had evolutionary advantages in the form of protection against malaria, the APOL1 risk alleles provided protection against the parasite that causes African sleeping sickness.
Social determinants of health, race, and racism are key to health inequalities among African Americans
While we now know more about the genetics and biology of kidney disease in African Americans, they play a relatively minor role in their excessive risk. Social determinants of health, race and racism are equally, if not more important, in explaining the excessive risk of kidney disease in African Americans compared to white Americans.
Kidney disease is not unique in that it exhibits a marked difference between races in terms of risks and outcomes. The same is true of many chronic diseases such as diabetes, heart failure, peripheral arterial disease, asthma and cancer, and pregnancy. It is known that maternal and fetal outcomes for African American women and infants are worse compared to their white counterparts, even after accounting for education and income.
These diverse health outcomes are indelibly linked to decades of social and economic injustice based on racism, the legacy of the Jim Crow segregation laws, unfair housing laws, the redlining of color communities, segregated and unequal education systems, environmental racism, and an unfair criminal justice system – and the system List goes on.
Reverend Traci Blackmon, a former nurse and nationally renowned social justice attorney, described differences in major cities in the United States in her presentation for Harvard Medical School’s webinar series, “Tackling Health Differences: Clinical Insights into Racial and Social Justice.” where African Americans live in areas that are food deserts with depressive values, few jobs, and inferior schools. These differences arise from government policy and societal decisions. To move the needle on different results in kidney disease, it is not enough just to understand the genetics and biology of the disease. The social and institutional barriers that have been erected to help one group of people over against another need to be dismantled.
Access and advocacy will help, but systemic changes are needed to meaningfully improve outcomes
As an additional step in improving the outcomes of people of color with kidney disease, people with kidney disease should receive timely referrals for specialized treatment. People from underserved communities visit a nephrologist less often before starting dialysis and are therefore more likely to have poorer dialysis results. In addition, they are less likely to have been assessed and listed prior to starting dialysis for a kidney transplant. Patients with kidney disease should be empowered to understand the stage of their kidney disease by knowing their eGFR (a method of measuring the filtering function of the kidney), advocating referral to a nephrologist, and advocating referral for a kidney transplant.
Patients, families, doctors and community health advocates will work together to eliminate differences in the incidence of kidney disease and its consequences.