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More than any other group, Black people suffer from chronic kidney disease (CKD) and are more likely to develop kidney failure, according to the American Kidney Fund.
Based on the most recent U.S. data about end-stage CKD, there were 5,855 cases per million for Black people vs 1,704 cases per million for White people (Harvard Health).
Kidneys are important organs that keep a person healthy. They come in pairs, with one kidney on each side near the spine and below the rib cage.
Kidneys, which are each about the size of a fist, clean blood, keep bones in good shape, make red blood cells, and help to control blood pressure among other tasks.
High blood pressure makes kidneys work harder
When a person has uncontrolled high blood pressure, blood vessels can be weakened or damaged. That damage increases the risk of heart attack and stroke — and forces the person’s kidneys to work harder.
Over time, overworked kidneys can’t do their job well and may eventually fail.
For white people, kidney function typically declines naturally as age increases, especially at 60+ years. But for Black people, the leading cause of kidney failure isn’t age. It’s having diabetes or high blood pressure.
Not only do Black people have higher rates of diabetes and high blood pressure than white people, but also less access to health insurance and medical treatment due to systemic racism.
To complicate matters, CKD is known as a “silent killer” because patients often show no outward symptoms.
All of these factors can result in delayed diagnosis of and treatment for CKD. In some cases, by the time a doctor discovers a Black patient has CKD, the disease is already advanced.
A genetic discovery
In addition to social determinants of health and structural racism, genetics and biology play a role in CKD.
In 2010, researchers found a variation in a gene named APOL1 that increases the risk of developing CKD. The risk rises if an individual with a certain APOL1 variant also has high blood pressure
While every person has the APOL1 gene, not everyone has the variation. However, people with African ancestry have the variation more than any other group. Why?
Like the sickle cell gene, which helped to protect African ancestors from malaria, the APOL1 variation helped to protect against African sleeping sickness.
Sharing genetic knowledge with GUARDD-US
In an upcoming study at the University of Pittsburgh and other sites across the U.S., the APOL1 genetic variation may help to empower Black patients and their clinicians to safeguard their health. The study is named GUARDD-US.
DR. PHILIP E. EMPEY AND DR. MYLYNDA MASSART
“The GUARDD-US study at Pitt will focus on Black patients who have high blood pressure — and their doctors,” explains Dr. Philip E. Empey, Associate Professor, Pharmacy and Therapeutics, at the University of Pittsburgh and study investigator.
“GUARDD-US will use genetic testing to identify which patients have the APOL1 variation and whether that knowledge has an impact on high blood pressure and kidney health treatment,” he adds.
If GUARDD-US participants and their health care providers are aware they carry the APOL1 variation, will they use that information to make positive changes that may improve their individual outcomes? “That’s what we want to find out,” Dr. Empey says.
Those changes may include helping a participant lower blood pressure by taking medications as directed, CKD screening, eating healthier foods, and exercising. “By treating high blood pressure with all the tools available, a person may lessen the impact of CKD,” notes Dr. Empey.
GUARDD-US, which is part of a larger study supported by the National Institute of Health, will use a community-engaged approach to enroll up to 350 Pittsburgh patients of African ancestry.
The participants must have high blood pressure and no existing CKD. They’ll be enrolled at community health centers, primary care facilities, and other locations.
“A special blood test will be given to participants to identify which people have the APOL1 gene variation,” says Dr. Mylynda Massart, Assistant Professor, Family Medicine at the University of Pittsburgh and co-investigator. “Some of the participants will know right away and that information will be shared with their doctors. The rest will know at the end of the testing period at a 6-month follow-up visit.”
All participants will be monitored and data will be collected at regular intervals throughout the study. This will include surveys, blood pressure monitoring, and electronic health record data analysis.
GUARDD-US will fundamentally help researchers better understand how to close the gap between what patients know and what patients do. This is known as “implementation science,” with the ultimate goal of improving the health of our Black population and decreasing the burden of advanced kidney disease.
“In this example,” Dr. Empey explains, “Black patients with high blood pressure will enroll in GUARDD-US and, through a blood test, some will learn they also have the APOL1 variation. With that information, patients know their chances of developing chronic CKD are high.
“Will that knowledge cause patients and their doctors to act differently than if they didn’t know?
“Will they be more likely to engage in evidence-based, preventative behaviors?
“Will their doctors be more aggressive with treatment on their behalf? That’s what GUARDD-US can tell us.”
Even more important to Dr. Empey personally is the hope that GUARDD-US’s genetic information will improve individual outcomes in a group of people who continue to suffer from large disparities and structural racism in healthcare.
“What I hope shines through from this study is that at Pitt, we’re passionate about inclusivity. As health care providers, we want to improve everyone’s health, but especially the health of individuals who’ve been historically underserved by the medical community. GUARDD-US is a step toward advancing precision medicine to all patients.”
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