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I learned about the perils of kidney disease at a young age. There were several dialysis centers in my neighborhood and my sister was on dialysis for years until she died at age 33, unable to get a transplant. I’ve lived my whole life in Georgia, where the mortality rate from kidney disease is more than 40% higher than the national mark. But within my community, people didn’t really prioritize their health care, and most didn’t have a primary care physician.

I knew I wanted to be a nurse when I was in second grade and accompanied my aunt on home health visits, during which she treated each of her patients like dear friends. When I joined Mitchell County Hospital as a surgical technologist, however, I rarely had a chance to speak to patients before we began surgery. Most of the patients that came into my operating room had already experienced renal failure and were undergoing dialysis as they hoped for a kidney transplant. Many had developed peripheral arterial disease and were coming to us to have a limb amputated.

It’s hard to describe how it feels to witness the scalpel pushing down through flesh, knowing the shape of your patient’s life is permanently changing, or the distinct sound the bone makes as it finally snaps – a sound I will never be able to forget.

In Georgia, roughly the same percentage of Black adults and white adults have kidney disease. But I can tell you that during the 15 years I spent in the operating room, every leg I saw removed and every dialysis catheter I helped put in belonged to a Black patient.

Kidney disease has always disproportionately affected Black people. In fact, Black people make up around 13% of the U.S. population, but account for around a third of those with kidney failure. I didn’t understand why – every day, I worked side by side with physicians, nurses and nephrologists who were knowledgeable, dedicated and compassionate. There was no doubt in my mind that they were providing the best care possible to all their patients, no matter the race or ethnicity. So why were Black patients the only ones ending up on our table?

When a fall down the stairs made it difficult to stand for the long hours surgery demanded, I had the impetus I needed to return to school and eventually enter patient care at a much earlier point in the chronic kidney disease timeline. As a new nurse practitioner, I dove into educating patients who were first being diagnosed with kidney disease by their primary care physician.

Many patients’ first reaction to receiving a diagnosis of chronic kidney disease is confusion – symptoms often aren’t noticed until the disease is in a later stage, and many patients already were dealing with common comorbidities such as high blood pressure, diabetes and cardiovascular disease. I made sure each of my patients received the same high-quality care, and I spent time reviewing and explaining the detailed care plan provided by their doctor. And still, my Black patients often suffered poor health outcomes. But now I saw why.

As my patients left the office, I could tell they often didn’t fully understand the disease process, and how each element of the care plan would have to work together to slow and control their CKD. How could a lifetime of habits be changed by one consultation? I knew when my patients returned home, many would not have access to nutritional food or be able to prepare the recommended meals. Some did not have reliable utility service at home, and others lacked transportation and would miss our next appointment – and the one after that. Stress and worry about financial issues, concerns about neighborhood violence – these social determinants of health and many others were immediate concerns, ones that dominated their thoughts and left little room for them to take care of their direct physical health.

Recently, a study showed that although Black and Hispanic patients saw higher performance on many measures of care delivery for chronic kidney disease, they still had similar or worse results on blood pressure and diabetes control outcomes than white patients. Historically, chronic kidney disease care has been too “one size fits all,” failing to address each patient’s individual barriers to care. Instead, a care plan should be a road map for each patient’s individual and unique journey. Personalizing care for each patient is essential if we are to improve racial equity in outcomes.

Slowly, the health care industry is awakening to the understanding that equality of care does not equal equity of care. In 2016, one of the first value-based kidney care companies, Somatus, was founded specifically to provide preventive care and to give whole-person support to kidney disease patients. Today I’m a nurse practitioner at this company, and each day I see the impact of individualized, patient-centric care.

At Somatus, my care team colleagues and I work together with a nephrologist and other health care providers to provide the whole-person support patients need in order to follow their care plan. We go to the patient’s home and look through the cupboards, figuring out where they can source nutritious food, showing them how to prepare meals, teaching them to monitor their blood pressure daily and arranging for transportation to medical visits. We even help them with administrative tasks and paperwork, and not only related to health – it’s hard to focus on your care plan when your electricity is shut off. We carefully evaluate each patient as an individual and surround them with support between their doctor visits.

There’s a long way to go to close the racial equity gap in kidney care, but as a growing number of health care plans partner with value-based companies, more doctors have access to care teams that act as extensions of their practice and support patients between visits. Whole person, 360-degree care that takes the person, their home and their neighborhood into account is the only way we can deliver equitable care to our kidney disease patients and keep them off the operating table.

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