The Path to Health Equity in North Carolina
- Fearless HB
- Oct 24, 2022
- 7 min read
Remarks by Harold M. Barnette
Delivered to the North Carolina Serious Illness Coalition
October 21, 2022
I’m Harold Barnette, co-founder of the Institute for Family Caregiving, Inc. in Durham, and a member of the North Carolina Coalition on Aging, and for the past year or so a member of the North Carolina Serious Illness Coalition’s Caregiver and Patient Engagement Work Group. My interest is in aging and health equity. Much of the discussion of health equity is abstract, ungrounded, and quasi-moralistic. But healthcare is a business; it’s operations and outcomes are highly measurable. We don’t need to be talking about health equity as some amorphous ideal, we should be approaching it as a well framed set of defined goals and empirical metrics. In addition to being a $4 trillion dollar a year business, healthcare has another salient characteristic: it is a highly regulated industry largely funded by public dollars. The power of public health administration mostly resides with the state. So that’s why my analysis of health equity in North Carolina begins at 1965.
For those of you too young to remember or who may not have been taught in history or civics class, the Civil Rights Act of 1965 officially lifted the onus of second-class citizenship from Black Americans, especially those living in the South. I was in my middle teens when this happened. We are not talking about ancient history; it was yesterday. Until 1965, the State of North Carolina enforced a political, social, and cultural regime of Jim Crow segregation that championed White supremacy and under which Black citizens had virtually no rights, including the right to healthcare. Every native Black North Carolinian born before 1965 was born into a landscape of legalized Black inequality and oppression. This precluded their gaining access to anything resembling quality healthcare.
Today (as of 2019, according to the census) there are approximately 295,000 Black North Carolinians over the age of 60. Every one of them would have been legally denied equal access to healthcare by the State of North Carolina during their most vulnerable formative years of development. That’s the first takeaway. The State of North Carolina caused permanent harm to an entire generation of older Black North Carolinians through its enforcement of the regime of Jim Crow segregation. Nearly 300,000 of them are alive today and presumably suffering the ill effects of this historic harm. We don’t know exactly to what extent because the matter has not been properly researched.
The thing that caused me to grasp this generational perspective on health equity in North Carolina was a very obvious racial disparity in the experience of family caregiving. Reviewing family caregiver research and literature, I was struck by the consistently higher burden of care endured by Black caregivers compared to their White counterparts. To me this suggested that Black caregivers were dealing with sicker people. Sicker people require more care. It followed logically that those denied access to care in their formative years would be more vulnerable to serious and chronic illness as they aged. Therefore 1965—the end of legal segregation in North Carolina—became central to my understanding of aging and health equity. But generational factors alone did not fully explain the great divide between Black and White health outcomes.
Today it is popular to frame discussions of health equity around the notion of “social determinants of health.” In IFC’s interactions and interviews with hundreds of Black family caregivers, we have never heard one refer to “social determinants” as a prime cause of caregiving-related problems. On the contrary, nearly all described their interactions with the healthcare system itself as the source of most of their difficulty. This led me to surmise that the bulk of disparity in health outcomes—at least among Black North Carolinians—is not social in nature; it is produced by everyday encounters with the healthcare system itself. This view was reinforced by constant testimonies of poor healthcare access, or treatment or outcomes by Black people who were not handicapped by “social determinants”—solidly middle class, upper middle class, and even media reports from wealthy people like the tennis star Serena Williams. As previously mentioned, healthcare is a business, and the nature of its operations should reveal the root of on-going—as opposed to legacy—causes of racially disparate health outcomes.
An incident from my personal health history illustrates a factor other than legacy racism that shapes bias in care. I was recently prescribed a medication known to have some potential kidney-based side effects. My doctor therefore ordered regular blood tests to measure kidney function over several months. My kidneys have always been healthy and continued to function normally despite the medication. However, I noted that attached to the test results was a racial identifier that I suspected meant the actual test data were “adjusted” in a manner now widely known to decrease the chance that Black patients qualify for top-of-the-line kidney therapies including dialysis and transplant. This practice, known as “race norming” has no scientific basis, but is widespread throughout healthcare and is known to disadvantage Black patients when it comes to quality of care. When I queried my provider, a large, state-supported, university-affiliated healthcare system through MyChart about this, I got a reply that the test was “supposed” to be discontinued because it was “no longer accurate and reliable.”
In fact, such racially manipulated results were never accurate or reliable. The practice of “adjusting” data in this manner is an arbitrary act based on faulty diagnostic algorithms built from non-representative research databases. In the 1950’s and 60’s—when I was growing up—American society was approximately 85% White, 12% Black and 3% “Other,” the basket designation given Latins, Asians, and Natives because they were so small a fraction of the population as to be considered irrelevant. That society does not exist today. It will not exist again. Diagnostic algorithms designed around data sources compiled during the reign of White numeric and cultural supremacy in this society are ill matched with the pluralistic population that now characterizes U.S. society. In healthcare this mismatch between clinical tools and population characteristics is having disastrous results across a wide range of diseases and conditions and is producing racial disparities in the routine, everyday operation of the healthcare system. This problem extends beyond diagnostic tests to a whole slew of flawed protocols, medical devices, clinical practices, and cultural barriers, as well as biased provider behavior.
So what is to be done about all this? I’m not one to simply harp on a set of problems or grievances. If you’re intrepid enough to delineate problems, you should be intrepid enough to propose solutions. I accept that responsibility. The first thing we do is start with a deeper understanding and more honesty around what is meant by “health equity.” Health equity is not an abstraction, a phrase tossed out to check a box. It is a quantifiable measure, an indicator of unjustified variance in care; that is to say, unjustified variance in real human suffering and even mortality. But, as one of my Work Group colleagues has pointed out, you can’t measure what you don’t count.
Today, notoriously, North Carolina has no reliable system for documenting—that is counting—the prevalence of racially disparate healthcare outcomes, along with identifying their sources both within and outside the healthcare system. But even before we get to that, we have the challenge of acknowledging where this landscape of healthcare injustice began—confessing original sin, so to speak. History tells us it began as a creation of the state. Racial inequity in healthcare was established by the State of North Carolina through its embrace of White supremacy and Black subjugation that was only terminated—at least on paper—in 1965, well within the scope of lived experience as about 300,000 Black North Carolinians can attest. Older Black North Carolinians face the double whammy of legacy health impacts from Jim Crow segregation, as well as ongoing institutional forms that are more prevalent today.
To summarize: before 1965 North Carolina had a legally established, racist healthcare system created by its state government. This system was enforced by the state’s sub-jurisdictions, and its administrative bureaucracy. It was entrenched by a web of discriminatory social norms and customs. After approximately 1965 (understanding social change doesn’t happen with the signing of a piece of paper) the overt, legal racism was converted into a less visible, more insidious, institutional form. That’s what we have today in a healthcare system riven by bias in research, clinical procedure, technology design and device manufacture, provider behavior, and many other sources. Changing deeply rooted racial bias in a $4 trillion industry will be very hard to do. But if we really want to achieve equity in healthcare, that is what we must aspire to do. On your screen you will see a set of recommendations for action I have developed to move our state toward a serious and accountable commitment to health equity.
The Path to Health Equity in North Carolina
—RECOMMENDATIONS—
FIRST STEPS:
1. Racial policies and practices rooted in Jim Crow segregation play a key role in North Carolina's glaring racial health disparities, with particular impacts among older African Americans. Acknowledgement of state culpability in generating racially disparate public health outcomes is the first step toward addressing contemporary challenges of health equity.
2. Acknowledging the impact of its past, biased healthcare policies, and the continuation of health-related inequities, The State of North Carolina must take affirmative measures to ensure that going forward, access to quality care is available to all of its citizens on a fair, accessible, and equitable basis.
NEXT STEPS:
1. The State of North Carolina, as a matter of record, should formally acknowledge that its historic support for Jim Crow segregation and other oppressive racial policies is the foundation of the state’s current healthcare inequities, and that its past policies have inflicted grievous, continuing harm on the health status of the state's minorities, particularly older African American citizens.
2. The State of North Carolina across all of its health-related administrative units and contract services should mandate the rigorous collection of racial and socio-economic data relevant to determining the extent of racial disparities in its public health system and; based on this data fund research and targeted, innovative programs to mitigate racial disparities; and withhold funding from any entity or enterprise not compliant with this policy.
3. The State of North Carolina should decline to fund the cost of any test, procedure, device, or healthcare practice demonstrated to produce, exacerbate, or facilitate the production of racially disparate health outcomes.
4. The State of North Carolina in consideration of historic policies limiting the development of healthcare infrastructure within disinvested, segregated, racial and ethnic communities, should initiate policies and targeted programs of direct public investment in healthcare services capacity as well as provide incentives for the development of entrepreneurial health-related capabilities in these communities.
© Harold M. Barnette, 2022. All rights reserved.
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