Derek Robinson, M.D. ǀ JUNE 24, 2022
These days, many of us are careful to read labels to be sure we steer clear of certain ingredients. There may be some items on the label we don’t recognize – but they sound ok, even healthy. We gloss over them. Ignore them. Until every so often, there’s a study or report that reveals a seemingly harmless ingredient as suspect. So, we watch for it. Question it. Maybe even avoid it.
Race modifiers are like that overlooked ingredient – not on labels at the grocery, but on some lab reports and medical records. As a factor that’s added to the estimated glomerular filtration rate (eGFR), a primary diagnostic method used to detect kidney disease, race modifiers, if applied, are listed in plain sight. And, even though the American Society of Nephrology and the National Kidney Foundation released a joint statement last year flagging race modifiers as inaccurate and potentially harmful, most patients – and many providers – aren’t aware there’s an issue.
In February 2022, in honor of Black History Month, the African Americans in Motion employee resource group here at BCBSIL asked me to speak about disparities in the diagnosis and treatment of chronic kidney disease in communities of color. I knew I’d have to touch on the topic of race modifiers, and that the news might be difficult for the audience to hear. So, I invited some colleagues for a panel discussion.
With this CMO Perspective message, I’d like to share some highlights from our February panel to increase awareness among physicians and offer ways you might start a discussion to increase awareness among your patients, too.
The Black Community is Doubly at Risk
We started with some stats. As referenced in the joint statement on the National Kidney Foundation website, more than 37 million adults in the U.S. have kidney disease. A disproportionate number of those affected by the disease are Black or African American, Hispanic or Latino American, American Indian, Alaskan Native, Asian American, and Native Hawaiian or Pacific Islander.
My colleague Dr. Ikenna Okezie, M.D., MBA, is chief executive officer of a company he co-founded in 2016 to introduce preventive and more holistic solutions for patients living with chronic kidney disease, or end-stage renal disease.
Dr. Okezie set the stage for our non-physician audience by outlining some basics, like the fact that the biggest factors leading to CKD are untreated high blood pressure and untreated Type 2 diabetes. In communities where access to healthy food and educational resources may be limited, Dr. Okezie noted, individuals may fall into unhealthy lifestyle habits, increasing their risk of developing conditions that can lead to getting CKD.
Dr. Okezie emphasized that often, “kidney disease is preventable, so this is really an opportunity to become more aware of what it takes to intervene early.” Dr. Okezie reminded the group that, while getting regular physicals is a great start, individuals must take an active role in managing their own health. That means paying attention to important numbers (like weight, blood pressure, cholesterol levels and blood sugar), getting exercise, eating right, reading labels … and asking questions if anything looks amiss.
Race Modifiers Have No Basis in Sound Science
Dr. Okezie explained to our audience, just as you may want to explain to your patients, that kidney performance is based on the organ’s ability to filter out wastes and toxins from the body. Measuring kidney function directly is a bit challenging, so there’s a formula to help calculate it. That measurement is the eGFR.
Somewhere along the way in history, Dr. Okezie explained, an additional element was added to the equation – the so-called race modifier, which, when applied, multiplies other factors leading to a higher eGFR. Basically, it overestimates kidney function in Black people and thereby contributes to health care inequities. Until recently, Dr. Okezie explained, the race modifier was a common, almost universally used adjustment. And while this is beginning to change, it’s still being used by a number of hospitals that simply aren’t aware it’s been flagged as flawed and outdated.
Transplants Can Transform Lives
Preventive care is the first line of defense. But, as we know for individuals who develop CKD, there are treatments that can offer some relief.
Dr. Christie Gooden, M.D., MPH is Surgical Director of the Pediatric Transplant Program at Medical City Dallas Hospital. Her expertise includes adult and pediatric kidney transplant, adult pancreas and liver transplant, dialysis access surgery, and advanced laparoscopic and robotic surgery.
I asked Dr. Gooden, to talk about her experience working with patients, especially those who’ve received kidney transplants.
Dr. Gooden said that, when organs such as the liver are beginning to fail, getting a transplant is the patient’s only option for survival. But with the kidney, a patient has another option: dialysis.
Since it can take years to be matched with a kidney donor, dialysis can offer some patients a ray of hope, or a way to buy some time. Unfortunately, as Dr. Gooden explained, many people don’t understand that dialysis isn’t necessarily efficient. Normally the body filters out toxins constantly. But with dialysis, it’s done intermittently. This means patients are tired, drained, often unable to work. A person’s entire schedule must be built around dialysis treatment, which also affects how they eat and perform other daily activities.
When a patient gets a kidney transplant, Dr. Gooden explained, it’s literally life-changing. No longer dependent on dialysis, the patient is free to get back to normal daily activities with a renewed sense of control over their own health. And if a patient can get a transplant they need dialysis, they can have a better quality and of life – extending their years of life and the life of the kidney.
How does the race modifier affect transplant eligibility?
To get on the transplant waiting list, a patient’s eGFR must be 20 or less, Dr. Gooden explained. The time it takes to get to the top of the transplant list will vary, and placement on the list may be advanced, depending on how long a patient’s been on dialysis. If a patient’s eGFR is 20 or less and they have a living donor that’s a match, there’s no waiting – the transplant can be made. On the surface, the process sounds logical enough. But there’s that hidden ingredient again.
Dr. Gooden noted that, while the recommendation now is not to use the race modifier, too many practitioners aren’t aware. This is unfortunate, she said, because “Black or African American patients’ eGFR is artificially increased by the race-based equation, which delays these patients from starting their evaluation, getting listed and having a donor worked up.”
Dr. Gooden said she finds she must educate her colleagues. The first question she asks is: “How do you define being African American? Does that only include people who have two parents born right here in this country? Is it based on how people define themselves, based on relatives or family tree?” With this approach, Dr. Gooden helps others recognize implicit racial bias:1 “We’re basically arranging people based on what we see.”
Dr. Gooden’s perspective as a transplant surgeon is vital. Without including too many graphic details, she shared a moment of revelation with our audience. “All kidneys look the same," she said. "I remember picking up a kidney and thinking it’s impossible to tell if it came from a man or a woman, or what their race was. And there’s no matching of a kidney to a person based on those factors.”
Ask Questions, Change History
Rajesh Govindaiah, M.D., MBA, is senior VP and chief physician executive at Memorial Health in Springfield, Illinois. He’s responsible for quality and safety, medical staff and graduate medical education, and physician alignment initiatives. He’s also co-chair of the Illinois Health and Hospital Association’s medical executive forums.
Last year, Dr. Govindaiah started a conversation with physicians and leaders in his health system to pave the way for change by challenging and rethinking the use of race modifiers in the diagnosis and treatment of CKD. I asked him to share a little bit about that journey.
Dr. Govindaiah acknowledged that, in medicine, the first response is often why – why should we change, why should we do something differently? After getting this initial reaction when raising the topic of race modifiers, Dr. Govindaiah and his team posed a question in response: Why should we modify eGFR due to race? “And when we asked the question,” he said, “it became quickly apparent that no one could explain.”
“So, we brought a group of people together including vested African American clinicians that are respected in our community and we really had to dig into this and say, what is the harm of change and what is the harm of continuing the way we are? And the harm is we are undertreating African American patients because we don’t recognize their disease.”
What was the result? Dr. Govindaiah summarized: “It took a little bit of work, and we didn’t always see eye to eye, but at the end of the day, we have removed this from every calculation of kidney function across Memorial Health and, instead of reporting two lines on the lab test, we just report estimated glomerular filtration rate, eGFR.”
Digging Deeper at BCBSIL
I’m happy to report that we’ve made some headway at BCBSIL, too.
Dr. Iulia Enacopol, M.D., is a BCBSIL Medical Director. She has more than two decades of private practice in internal medicine in the Chicagoland area. Recently, Dr. Enacopol worked with a cross-functional team that researched the use of race modifiers across a range of clinical formulas. The team also considered how those formulas may intersect with our medical health policies as a health plans.
I asked Dr. Enacopol to help our non-physician, employee audience understand what medical policy is, why it’s important and what her team found and improved upon recently.
Dr. Enacopol explained that our medical policy serves as a guideline for determining medical necessity, which can affect benefit approvals and coverage for our members. As the algorithms and calculations of the clinical formulas came under scrutiny, she said, her team realized that: “Race is not a true biological construct – it’s more of a social construct. We have to look at it and see if, by the way we apply our guidelines, our medical policy, and our medical review, we give equitable decision making for coverage for all our members the same way. That is, until the medical community expands the use of race-neutral equations.”
Dr. Enacopol’s team reviewed the evidence and presented recommendations, which were approved by BCBSIL’s medical policy committee and adopted. A note was added to BCBSIL’s kidney transplant medical policy to affirm that, “Per a joint statement by the National Kidney Foundation (NKF) and the American Society of Nephrology (ASN), race modifiers should not be included in equations to estimate kidney function.” Dr. Enacopol and her colleagues continue to interface with physicians to deliver care in the community and expand awareness.
Help Your Patients Understand
As Dr. Enacopol explained, there’s still a lot of work to do. “We’re still seeing clinicals coming in with race adjustments. It varies from hospital to hospital, lab to lab.” Physician awareness and change at both the hospital and lab levels are critical. But patients have a right to know about race modifiers too, because it can affect their treatment.
As we wrapped up our panel discussion with the African Americans in Motion group, participants seemed appreciative, but also a bit disheartened. In our final Q&A with the group, the panelists and I wanted to leave the audience with a positive and hopeful message.
What can patients do to feel empowered?
Dr. Enacopol offered these suggestions: “It’s really important to know your family medical history. Make a point of sitting down with your parents and your siblings. Gather the information. Talk to your primary care physician. Talk about your kidney function and ask straight up if a race modifier was used or not Ask questions and work with your doctor to form a plan. ‘What medications should I adjust, if any? Do I have any conditions that could worsen this? Can we change the progression?’ Establish a good relationship with your primary care provider. Remember, t’s a two-way conversation there.”
Where do we go from here?
Left unchecked, race modifiers can endanger patients by portraying an inaccurate level of risk. When it comes to chronic kidney disease, this could mean patients aren’t aware early on, when the disease is easier to treat. And, for patients diagnosed with CKD in its later stages, the use of race modifiers can prevent them from getting necessary care.
Undoubtedly, providers use race modifiers today because they are part of the systems of care and not to cause harm. Unfortunately, the U.S. health care system hasn’t challenged these modifiers or interrogated their underlying assumptions enough. Like other racial myths taught in medicine, they became structurally built into our health care delivery system. But all good intentions aside, there’s no excuse for turning a blind eye, now that we know more. This is an example of systemic racism in health care – not just at hospitals, but at major lab companies that deliver results to providers.
Racial consciousness is important in the pursuit of health equity; however, where the application of race causes harm, it's time to take race out of the equation. And we can all help, by asking questions, spreading the word, and bringing race modifiers – that overlooked ingredient – to light.
If you’d like to share your thoughts or experience on this topic, I invite you to email our Blue Review provider newsletter editor. Comments we receive are not published or shared externally.