Kidney disease Black women APOL1 gene variants are creating a silent crisis that is being missed in clinical settings due to decades of underdiagnosis.

Your annual labs came back fine. Creatinine: normal. BUN: normal. Your doctor reviewed them in under two minutes and moved on.

But here is what your doctor may not have told you: the standard formula used to estimate kidney function was historically calibrated using race as a variable in a way that systematically underestimated kidney disease in Black patients — meaning many Black women were told their kidneys were functioning adequately when they were not.

This was changed in 2021. But the damage from decades of delayed diagnosis has already been done — and the underlying biological and structural risk factors remain.

The Disparity Is Not Small

Kidney disease does not affect all communities equally. The gap between Black and white Americans when it comes to chronic kidney disease (CKD) and kidney failure is one of the most pronounced disparities in all of American medicine.

What Is the APOL1 Gene — and Do You Have It?

The APOL1 gene produces a protein that protects against certain parasites found in sub-Saharan Africa, including the parasite that causes African sleeping sickness. This genetic adaptation evolved as a survival advantage — but it came with a trade-off that is now playing out in the kidneys of Black Americans.

Two high-risk variants of APOL1, called G1 and G2, are found almost exclusively in people of West African descent — the ancestral origin of most Black Americans. These variants dramatically increase the risk of several kidney diseases, including:

• Focal segmental glomerulosclerosis (FSGS) — having two high-risk APOL1 copies raises the risk of FSGS approximately tenfold compared to those without the mutation
• Hypertension-associated kidney disease — APOL1 variants accelerate kidney damage from high blood pressure
• HIV-associated nephropathy — APOL1 strongly increases kidney damage risk in the context of HIV infection
• Lupus nephritis — kidney involvement in lupus is more severe in Black women with high-risk APOL1 variants

The eGFR Equation That Misclassified Millions of Black Patients

For decades, the most commonly used formula to estimate kidney function — the eGFR (estimated glomerular filtration rate) — included a “race correction factor” that artificially inflated kidney function scores for Black patients by approximately 16%.

The rationale was based on the assumption that Black people had higher muscle mass and therefore higher baseline creatinine — a premise that researchers and clinicians have now recognized as scientifically flawed and clinically harmful. The effect was that Black patients were told their kidney function was better than it actually was, delaying diagnosis, delaying referrals to nephrology, and delaying access to kidney transplant waitlists.

In September 2021, the National Kidney Foundation and the American Society of Nephrology issued a joint recommendation to eliminate race from the eGFR calculation. The new race-free formula (CKD-EPI 2021) is now the standard of care.

If your kidney function was ever measured using the old formula, ask your doctor to recalculate using the current CKD-EPI 2021 equation. Your actual kidney function stage may be different from what you were told.

Why Hypertension and Diabetes Put Black Women at Compounded Risk

The two leading causes of kidney failure in the United States are diabetes and hypertension — both of which disproportionately affect Black women. This means the APOL1 genetic risk, the historical underdiagnosis from the eGFR race correction, and the elevated rates of diabetes and high blood pressure are all converging on the same population.

Black women with insulin resistance or diabetes, uncontrolled hypertension, or fibroids requiring NSAIDs for pain are facing multiple simultaneous risk factors for kidney damage — most of which are not being addressed proactively in standard care settings.

Long-term use of NSAIDs (ibuprofen, naproxen) — commonly used to manage fibroid pain and menstrual cramps — also causes direct kidney damage over time and is a frequently overlooked risk factor in Black women who rely on these medications for chronic pelvic pain.

What to Ask Your Doctor — Specifically