Rita L. McGill, MD, MS, Associate Professor, Section of Nephrology, Department of Medicine, University of Chicago
Early intervention can result in better outcomes for patients with autosomal dominant polycystic kidney disease (ADPKD), but African-American and Hispanic patients are less likely to receive beneficial interventions like pre-emptive kidney transplantation, when compared with White patients with ADPKD.
Incidentally Discovered ADPKD
Rita McGill, MD, MS, explains that “ADPKD is diagnosed via imaging (and occasionally via genetic testing); kidney diseases are detected primarily due to abnormal blood tests. So, if you have health literacy and know that ADPKD runs in your family, abnormal blood tests or high blood pressure may lead you to seek imaging.”
Studies have shown that there is no difference in the incidence of ADPKD based on racial or ethnic identity. However, according to Dr. McGill, “The APO-L1 mutation, exclusive to people of African descent, results in more severe manifestations in several kidney diseases, so kidney failure from other causes also often clusters in African-American families. Therefore, having relatives with kidney failure is not as unambiguous a clue in this population. When you add the burdens of socioeconomic disadvantage and reduced health literacy, you see a surprising number of African-American (and Hispanic) patients for whom ADPKD is simply discovered incidentally after kidney failure has occurred, despite awareness of having parents and relatives with kidney failure.”
Early Intervention
Early intervention is important to optimize long-term prognosis. As Dr. McGill clarifies, “simply controlling blood pressure helps slow the progression of kidney disease. When you add kidney-protective drugs such as ACE inhibitors, ARBs, SGLT-2 inhibitors, and finerenone, you buy more time for patients and their kidneys. In addition, water-loading and vasopressin V2 receptor antagonists are specifically helpful for ADPKD. If you are an asymptomatic person with ADPKD getting none of this, your kidneys are losing years.”
Dr. McGill and colleagues studied the differences between African-American, Hispanic, and White patients with ADPKD in terms of transplant rates before and after dialysis was initiated. “Race disparities in access to transplant improve after the onset of dialysis, but do not disappear,” notes Dr. McGill. “A large part of the disparity is due to fewer living donations. People with familial kidney failure are naturally concerned about their own prognoses. If you know that your family’s kidney failure is due to ADPKD, unaffected family members can feel confident about donating. So, diagnosis is important.”
Socioeconomic Barriers
Dr. McGill continues, “Another barrier is the time-off and lost income to living donors. In some cases, the kidney patient and the spouse have insurance (and income) only because of the spouse’s employment. This can be a powerful impediment to spousal donation (which is very effective in ADPKD, since the spouse usually does not share the genetic heritage). Policy initiatives to get employers to support employees who donate their kidneys would be very helpful.”
There is much work to be done to ensure equitable medical care for all, according to Dr. McGill. “Initiatives that improve health literacy, promote explicit diagnosis of ADPKD, and provide more and earlier care all would help,” she adds.
