Approximately 13% of African American individuals have two copies of variants of the gene encoding apolipoprotein L1 (APOL1), placing them at risk of developing APOL1 kidney disease (1). Yet, few people know they have these variants or the risks they pose to their health.
These APOL1 risk variants are associated with faster kidney disease progression and are more common among individuals with focal segmental glomerulosclerosis, hypertension-associated kidney disease, HIV-associated kidney disease, and lupus nephritis. Lack of awareness may be contributing to disproportionately high rates of kidney diseases and progression to dialysis among African Americans in the United States, who account for 13% of the population but 16% of those with chronic kidney disease and 35% of those on dialysis, said Susanne B. Nicholas, MD, MPH, PhD, a professor of medicine at the David Geffen School of Medicine at the University of California, Los Angeles. “If we aren't able to get these patients with APOL1 risk variants tested early, which allows them to get treated when treatments are available, the consequences are a more rapid progression of their kidney disease to kidney failure, as well as overall poor clinical outcomes,” Nicholas said.
To prevent such poor outcomes, Nicholas is participating in a Kidney Health Initiative steering committee that is creating a roadmap to raise APOL1 kidney disease awareness, increase testing for these disease variants, boost participation of at-risk individuals in clinical trials, and reduce barriers to clinical trial participation for individuals in affected communities (2). To achieve this, the steering committee has brought together patient advocates, clinical researchers, pharmaceutical companies, and the US Food & Drug Administration to share their perspectives. “The roadmap will allow us to see where to begin, where we want to end, and how we can maneuver through [barriers] to get to the finish line,” said steering committee member Patrick Gee, Sr., PhD, a patient advocate and chair of the Kidney Health Initiative's Patient and Family Partnership Council.
ASN Steering Committee Workgroup Members. Kidney Health Initiative. Current project. Roadmap to increase disease awareness and clinical trial participation of people carrying high-risk genetic variants of APOL1-associated nephropathy. Accessed March 7, 2023. https://khi.asn-online.org/projects/project.aspx?ID=91
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Nicholas SB, Cervantes L; Clinical Care & Innovation Workgroup of the American Society of Nephrology Health Care Justice Committee. Health care equity and justice scorecard to increase diversity in clinical trial recruitment and retention. J Am Soc Nephrol 2022; 33:1652–1655. doi: 10.1681/ASN.2022040427