The Gene You Have Never Heard Of Is Driving Kidney Failure in Black Communities

In 2010, researchers identified two variants of the APOL1 gene that create a three-to-five-times greater risk of kidney failure in people of African descent (Genovese et al., 2010). Sixteen years later, most patients who carry these variants are unaware. Neither do many of the clinicians treating them. African Americans represent 13% of the U.S. population but account for 32% of patients on dialysis (Kidney Health Initiative, 2024). About half carry at least one APOL1 variant. Thirteen percent carry two of the variants, placing them in the high-risk category (Nadkarni et al., 2018). These patients often present with proteinuria, rapid eGFR decline, and kidney failure at a mean age of 45, arriving at dialysis nine to twelve years earlier than their non-APOL1 counterparts (Freedman et al., 2021). Many patients are asymptomatic until the damage is advanced.

That gap between discovery and awareness is the reason I co-founded the APOL1 Action Alliance with Sharron Rouse, herself a kidney disease, dialysis, and transplant survivor. As a long-term transplant recipient living with multiple chronic conditions, I know both sides of this issue. AAA is the first nonprofit dedicated exclusively to APOL1-mediated kidney disease, bringing together genetic education, testing access, patient advocacy, and connection to precision medicine therapies now in clinical development. Our Know Your Risk campaign is taking APOL1 education into barbershops, churches, HBCUs, and nursing chapters across the Washington, D.C. region. APOL1 genetic testing is available through several clinical and laboratory partners, and in some instances may be provided at no cost.

On June 27, 2026, AAA will hold its inaugural APOL1 Empowerment Summit at the College Park Marriott in Hyattsville, Maryland, from 11:00 a.m. to 3:00 p.m. ET, with a hybrid option for virtual attendees. Register at apol1alliance.org/events. Admission is free. Your patients need you to know about APOL1. Some of them are sitting in your waiting room right now.
 

References

Freedman, B. I., Moxey-Mims, M. M., Alexander, A. A., Astor, B. C., Birdwell, K. A., Bowden, D. W., Bowen, G., Bromberg, J., Colhoun, H. M., Divers, J., Fornoni, A., Fried, L. F., Garg, A. X., Genovese, G., Groopman, E. E., Iyengar, S. K., Kaplan, B., Kao, W. H. L., Kimmel, P. L., … Sedor, J. R. (2021). APOL1 long-term kidney transplantation outcomes network (APOLLO): Design and rationale. Journal of the American Society of Nephrology, 32(2), 299–312. https://doi.org/10.1681/ASN.2020091282

Genovese, G., Friedman, D. J., Ross, M. D., Lecordier, L., Uzureau, P., Freedman, B. I., Bowden, D. W., Langefeld, C. D., Oleksyk, T. K., Uscinski Knob, A. L., Bernhardy, A. J., Hicks, P. J., Nelson, G. W., Vanhollebeke, B., Winkler, C. A., Kopp, J. B., Pays, E., & Pollak, M. R. (2010). Association of trypanolytic ApoL1 variants with kidney disease in African Americans. Science, 329(5993), 841–845. https://doi.org/10.1126/science.1193032

Kidney Health Initiative. (2024). Roadmap for advancing awareness, genetic testing, and clinical studies of APOL1 kidney disease. American Society of Nephrology. https://khi.asn.org

Nadkarni, G. N., Gignoux, C. R., Engel, S. M., Adeyemo, A. A., & Parsa, A. (2018). Association of APOL1 risk variants with kidney disease in a population of African ancestry. The New England Journal of Medicine, 378(18), 1690–1698. https://doi.org/10.1056/NEJMoa1710425

APOL1 Genetic Testing Resources