A growing public health campaign is calling on people of Caribbean and African heritage to undergo genetic testing for a gene variant that significantly increases the risk of chronic kidney disease and kidney failure. The initiative highlights the APOL1 gene, a genetic risk factor thought to be carried by around 1 in 10 people with recent African ancestry, which medical experts say can predispose carriers to severe kidney complications later in life.
Advocates behind the campaign warn that individuals with certain APOL1 variants are far more likely to develop chronic kidney disease, a condition that can gradually lead to organ failure and death if undetected and unmanaged. The drive to raise awareness follows emerging research showing that APOL1 variants are especially prevalent in people of West and Central African descent, including those in the Black, Afro-Caribbean and African American communities.
Medical experts say that early diagnosis can be lifesaving because it enables individuals at risk to work with clinicians on strategies to slow the progression of kidney damage and prevent the onset of kidney failure. Awareness efforts are also tied to AMKD Awareness Day, established to spotlight APOL1-mediated kidney disease (AMKD) and encourage communities to “be APOL1 aware.” The annual health awareness day underscores the importance of understanding one’s genetic risk and seeking testing where available.
Recent developments in kidney health research and care are also offering potential hope for affected communities. Pharmaceutical trials investigating inaxaplin (VX-147) — a small molecule targeting APOL1-mediated kidney disease — have advanced into a late stage of clinical testing, with regulators granting it Rare Pediatric Disease Designation and Breakthrough Therapy status from the U.S. Food and Drug Administration, and priority designations in Europe. If successful, this treatment could be the first to address the underlying genetic cause of the condition.
Meanwhile, health systems abroad are starting to introduce APOL1 genetic testing programs to improve care and reduce health disparities among people of African and Caribbean heritage. In the United Kingdom, the NHS has rolled out a genetic test for potential kidney donors that identifies APOL1 risk variants. This enables clinicians to advise individuals at higher risk of kidney disease about donation suitability and to provide regular monitoring, potentially preventing future kidney failure.
The campaign’s backers emphasize that while the APOL1 gene itself does not guarantee that someone will develop kidney disease, it does confer a higher risk that merits timely testing and preventive care.
