Chronic kidney disease represents one of the most dramatic examples of racial and ethnic disparities in health in our nation.
I’d like to start with some questions which stem from two articles I recently read. The first, you co-wrote in 2018, titled Kidney Disease Among African Americans: a population perspective. The second, which happens to be co-written by one of your UCLA colleagues, Dr. Susanne Nicholas, titled Current State and Future Trends to Optimize the Care of African Americans with End-Stage Renal Disease.
Both articles assert that chronic kidney disease (CKD) represents one of the most dramatic examples of racial and ethnic disparities in health in our nation. They each also enlighten readers about the prevalence of CKD, the ladder article noting that later-stage kidney disease is 3.5x more likely in African Americans as compared with Caucasians. It also contends that African Americans are 10x more likely to develop hypertension-related kidney failure and 3x more likely to progress to kidney failure.
My first question, which will provide context for our conversation at large, is whether this disparity in health is also evident in other minority populations, like Hispanics? If so, is the issue still that much greater in the African American population?
When we look at multiple racial and ethnic groups across the United States, the findings are similar, but not as dramatic as in the African American population.
According to USRDS data, there is an 88%* greater adjusted incidence for ESRD (end-stage renal disease) among Hispanics than for Caucasians. It’s a 31%* greater incidence in the Asian community, and 112%* greater in the American Indian community. Interestingly, the incidence in the American Indian community, which used to be similar or even greater than the incidence in the African American community, has decreased. Its marked improvement in the rate of kidney failure is attributed to better – and more consistent – care (e.g., better control of high blood pressure and diabetes, the two biggest drivers of kidney disease) provided through the Indian Health Service (Side note: IHS is an agency within the Department of Health and Human Services responsible for providing federal health services to American Indians and Alaskan natives).
One thing is clear: we need to dedicate time and financial resources to both education and earlier intervention to preempt further increases in later stage disease in all of these populations.
“There are sociologic and biologic drivers of disparity in our health care system.”
— Dr. Norris
The above referenced articles also provide a perspective on the clinical, socioeconomic, cultural, genetic, and social determinant drivers of this “health disparity dynamic.” Which of these drivers are most dominant?
In my mind, there are two types of “drivers of disparity:” sociologic and biologic. In many cases, the sociologic outnumber and/or beget the biologic factors. In fact, disparities are differences that would not be present in an equitable society. So technically, disparities are due to sociologic differences and the biologic differences they create.
We’ve found that when we cross-reference sociologic factors with patients who are likelier to end up on dialysis and with kidney failure, certain commonalities are present: lower educational attainment, resulting in depressed employment opportunities, and with limited to no access to insurance or quality health care.
Think about how many patients need to make an economic choice between keeping the lights on, paying the rent, paying for food or paying for medication…even though they live in America.
“The Civil Rights Act didn’t dictate that everything be made equal. It only said, stop these practices moving forward.”
— Dr. Norris
So, it seems that the real question is…are health-affirming resources, like public health programs, public schooling, employment opportunities, housing opportunities, and access to healthier foods equally distributed across America or not?
That’s exactly right. And, of course, the answer is no. The “reasons why” date back to old “resource and opportunity distribution lines” and laws put into practice many decades ago.
Still up to the 1950’s-1960’s, “society” had laws that told African Americans where they could and could not live. And there was a catch: no one (businesses, grocery stores, hospitals, etc.) wanted to invest resources (time nor money) in those neighborhoods putting the African American community in a big hole. Eventually, the Civil Rights Act outlawed these practices, declaring them discriminatory. In reality, The Civil Rights Act didn’t change nearly as much as people think. It didn’t insist that everything was made equal…looking backward. It only said, stop these practices moving forward (stop digging the hole). It didn’t address the group of people ‘already in the hole from decades of discrimination.’ And this has continued for many, from generation to generation.
This is the foundational reason for the gaping disparity in healthcare.
If you’re a member of a marginalized minority population, you experience all the stressors of modern daily life (e.g., making sure your kids are safe, that your family has enough to eat, that you can pay for your medicine) and the added stress associated with discrimination and being much more likely to live in disinvested communities. The totality of these circumstances increase maladaptive coping mechanisms (i.e., eating disorders, smoking, alcohol consumption), which also increase risk for obesity, diabetes, hypertension and chronic kidney disease.
“A lot of things happen to people because of their race,
but race doesn’t actually do anything.”
— Dr. Norris
Let’s get to the answer that everyone wants to know and is debating: does race play a role when discussing kidney disease and estimating kidney function?
Kidney disease is a unique disease mostly driven by diabetes and hypertension and the social inequities that impact both of them. There are some kidney diseases that are hereditary, being related to a gene polymorphism (def., polymorphism, as it’s related to genomics, refers to the presence of two or more variant forms of a specific DNA sequence that can occur among different individuals or populations.). One condition is a “high-risk”-for-CKD APOL-1 polymorphism that is more common in African Americans. This gene, however, is not related to race, per se.
For example, when we look at adult polycystic kidney disease (PKD or an inherited disorder in which clusters of cysts develop primarily within your kidneys, causing your kidneys to enlarge and lose function over time), it’s been thought to be more prevalent in the White vs Black population; It’s actually not more prevalent in either population. The PKD gene isn’t dictated by whether or not you’re White or Black. It’s dictated by whether or not you have the PKD gene.
Similarly, let’s look at the APOL1 gene, recently widely discussed. APOL1 is a genetic polymorphism, just like eye color. You can have brown or blue eyes and they may be more common in one racial group or another, neither are directly related to race. Race is a socially-assigned designation.
That said, there is a particular APOL1 gene variant that is thought to have evolved to help protect individuals in sub-Saharan African geographies against the sleeping sickness parasite. Patients with this gene variant seem to be at greater risk for developing kidney disease. And, yes, the gene is more prevalent in the African American population. But, that’s not because of race. It’s because many African Americans are descendants of those who lived in these specific geographic regions where sleeping sickness was more prevalent. It doesn’t have anything directly to do with being ‘Black’ or even for being of African ancestry (not everyone with African Ancestry has it), rather it’s driven by local geography.
This understanding is critical, especially as we discuss race and social justice as it relates to health care. Race should be more of a “background attribute” that we consider as part of overall history and nothing else. Meaning? A lot of things happen to people because of their race, but race doesn’t actually ‘do’ anything. Race is a risk factor for racism, and racism is a risk factor for poor health.
If race shouldn’t play a primary role, are there any racial agnostic tools or methods that can be used effectively today for kidney care?
Yes, although they are not all “tools,” per se. Being a member of a marginalized racial group increases the likelihood that one has been and continues to be exposed to many social and psychological factors that increase the risk of kidney disease. But these are the three things that we can do right now to have impact:
- Make kidney care a priority within the entire healthcare ecosystem: providers, systems, payers
- Engage PCPs early in the process as they are at the frontline of chronic disease management, but make sure they have the support needed (such as a multidisciplinary team) to address the many social and psychologic issues that increase the risk of CKD progression
- Make any new measure easy for the PCP to implement. All specialties (e.g., cardiology, gastroenterology, endocrinology) are looking to the PCP to help with earlier-stage detection and care. So, whatever we’re asking them to do has to be as turnkey as possible (yes, potential roll-out of risk assessment tools and clear guidelines for how to treat is one way)
“Many in the healthcare ecosystem don’t acknowledge
that America is still largely based on a caste system.”
— Dr. Norris
Is there deep – or only superficial – awareness and understanding of these social and racial factors among those in the healthcare ecosystem?
Some still believe that race is the only factor that matters, while others believe it should never be considered. The reality is that it’s a combination of factors due to racism, not race, that distinguish people, and as a patient exhibits more factors, his/her risk increases. Outside of phenotype, there are more genetic differences within racial groups of people than across groups.
Many in the healthcare ecosystem don’t acknowledge that America is still largely based on a caste system (across multiple identity dimensions, including, but not limited to, race). And it is difficult for some doctors to understand the nuances of being assigned to a lower caste based on physical identity, where many patients must overcome the myriad of socioeconomic factors and structural barriers (policies, practices) that get in the way of good health.
Looking through an optimistic lens, we’re seeing increased conversation about chronic kidney disease and associated racial injustices. Is there any historical evidence that demonstrates that increased societal discussion begets fairer and better care for marginalized populations?
That’s a great question, with a set of very complicated answers.
On the positive side, societal conversations have accelerated, largely driven by the pandemic and the (pending) recession.
On the negative side, we have yet to learn from past injustices and the impact they have on health. There continues to be disproportionate suffering (social, political and economic) among marginalized populations.
To illustrate, let’s remember the Great Recession of 2007-2009.
Not surprisingly, wealth losses were distributed unevenly across the total population. In dollar terms, older, wealthier households lost the most, simply because their asset holdings were large to begin with and were more concentrated in equity investments, which declined sharply in value. In percentage terms, however, the largest wealth losses were suffered by African-American and Hispanic families, a significant factor when it comes to poor health.
And safety net programs—some of which were expanded during the recession and its recovery—mitigated the worst economic effects but were not available to all households and were insufficient to compensate for the depth of the downturn.
Although an economic recovery began around 2011, many in the lower quartile of society, never fully recovered. And, with the COVID-19 pandemic, history is repeating itself, including a looming recession and increasing gaps in wealth.
Today, with new generations of healthcare providers, many are more sensitive to these types of issues. We also have open- and closed healthcare systems like Cedars-Sinai, The Mayo Clinic, The Cleveland Clinic, UCLA, Kaiser Permanente, the VA and more, that are seeking to address the structural social elements that are adversely impacting the health outcomes of patients. Time will tell.
“As a Nation, we need to think about how we can imbed health into our society.”
Do we have quantitative or qualitative data that indicates that new strategies are working for individual patients, but that these efforts still need to be implemented at a population health level?
Yes, to have the most impact, we must implement at the population health level.
Remember my example regarding kidney disease trends in the American Indian population? Historically, they had very high rates of kidney failure, the same or greater than in the African American population.
But, in recent years, these rates have declined, attributed to the delivery of kidney disease risk factor education (diabetes), higher quality care, improved access to care and improved affordability through the Indian Health Services organization. This is an example of both a population health and population health management (health system) approach.
As a Nation, we need to think about how we can imbed health into our society. How can we create a culture of health? How can we prioritize building the healthcare infrastructure and hospitals needed in communities with higher rates of (or risk for) chronic diseases – like high blood pressure, diabetes and chronic kidney disease – and lower rates of insurance coverage vs ignoring those communities that need it most?
At some point, we have to make the ultimate decision: Is it important enough to us, as Americans, to change how we’ve always done things, and embrace a vision for America that’s based on true equity and justice for all?
And we must also change those ‘community factors’ – like education – that also correlate with health. If we improve the equity of the educational system, it allows marginalized population groups to get better jobs, better housing, and insurance. All of these factors yield better health and improved ability to manage chronic diseases, like kidney disease.
Deeper dive: the domino effect of inequality in education.
The United Negro College Fund website cites one of many alarming statistics at https://uncf.org/pages/k-12-disparity-facts-and-stats:
Students of color are often concentrated in schools with fewer resources. Schools with 90% or more students of color spend $733 less per student per year than schools with 90% are more white students.
Side note: Thus, a school in a Black school district with 250-300 students gets ~$200,000 less every year (year over year) than a peer public school in a White school district.
“There are multiple levels in which disadvantage operates. You can’t just fix one thing at a time.”
— Dr. Norris
I’ve read about a number of initiatives being implemented (on a small scale) in communities across the U.S. with the goal of helping to mitigate disparities among African Americans. There are clinical assessment and social determinant tools for medical interventions, outreach programs, therapeutic adherence programs, pharmacological treatments that control or eliminate CKD, and patient engagement programs, to name a few.
Because we likely can’t do everything, which are the first three that you would recommend?
Yes, we see these initiatives or interventions here and there. The challenge is that there are multiple levels through which disadvantage operates. We need to address them all but (as a nation) do not seem to have the will, desire or interest to do it. And there’s no one “easy fix.” We have patients who have been experiencing “wear and tear over time.” If we only focus and change one piece of the puzzle, will we really improve their health? Probably not. But we take the smaller wins as we build to the bigger goal.
Today, grants are mostly given to researchers who conduct studies looking at one singular vs. multiple variables. The better path forward is to solicit project “funders” and investigators who will study multi-dimensional problems, working closely with community partners who have the best understanding of the nuances of those neighborhoods.
But few have the appetite to fix the bigger, overlapping issues, wanting to show success just one piece at a time.
“Community partners must be a part of research design, because they have the most critical insights, as the ‘recognized PhD of the Sidewalk’.”
— Dr. Norris
But, there are some great new things to talk about. Several Institutes at NIH, including the National Institute for Diabetes, Digestive and Kidney Disease, just held a series of workshops on structural racism and kidney disease. They are also seeking new grants that assume co-design by investigators and community partners.
Whether our community partners have high or low levels of educational attainment, they have high levels of intellectual insight as to what’s happening in a given community.
They have, what one of my community partners called, the ‘PhD of the Sidewalk’. Another colleague from Loyola Marymount tells me that community partners are the only ones who have the ‘WMD’ degree or the ‘what matters degree.’
“If I were King for the day, the first thing I’d do is implement universal healthcare. Nothing else would be as impactful.”
— Dr. Norris
You’re going to love this next question. I’ve looked at your very impressive resume, but there was one ‘prestigious title’ that I did not find. What would happen if I made you King for the Day? As King, you could single-handedly change anything you wanted in regard to CKD care in the U.S., including, but not limited to, policy changes, guideline changes, new adopted practices at the PCP and specialty level, even new payer parameters. There would be no barriers, no cost concerns, nor logistical issues to overcome. What would you do – starting now?
Well, this is great fun…the first thing I would do as King…is to create high-quality, universal healthcare. Undoubtedly, that would have the greatest impact. There would still be structural issues that impact so many aspects of health but having access to universal quality care would help CKD patients – and its risk factors – and would be most transformative.
Universal care also helps to address many of the downstream problems that arise from lack of educational attainment and associated employment issues. It’s not going to impact the excessive ‘wear and tear on the body’ that comes from being in a society that views you as “less than”, but it would enable better preemptive care before patients adopt maladaptive behaviors.
As a champion for addressing diversity and injustice issues, I would love to see America be a country where its founding aspirations for equity and justice for all are realized.
Do I have more time as King? If so, I would also immediately implement:
- Political/Campaign Finance Reform. America is supposed to be based on the principle that everyone’s vote has the same weight. Political candidates would then be accountable to their constituents and not to lobbyists.
- Judicial System Reform. I don’t think that appointees should have guaranteed lifetime posts. And, under my ‘rule’, only appointees with a track record for reviewing cases and law through both an equity and justice lens would be allowed to serve, rather than referring to legal precedent, which is based on the most racist and sexist eras of our history.
- Other Equity Reforms. I would mandate that each State/County allocate right-sized resources for education, infrastructure, healthcare, etc. – across neighborhoods. And since ‘equal’ allocation does not ‘catch people up’, my federal government would also step in to ensure equity.
If we did these things, with the overarching goal to increase the number of educated and healthier people, we would have a more motivated, excited and committed population.
That’s because… when people know that their country is investing in them, in their families, in their communities, and in their success, and they likewise have ownership in the nation, they respond ten-fold.