Kidney disease represents an ideal mirror through which one can readily appreciate the problem of racial and ethnic health disparities. It is often debilitating and deadly for all persons, but it is 4 times greater for blacks, and it often strikes at a vulnerable and productive time in life. This disparity is evident in both diagnosis and treatment. For kidney disease, objective, normative, and professional assessment is possible. I happen to reside in a community and region whose statistics further highlight this compelling disparity (Table 1).
Blacks accounted for 38% of the new cases of end-stage renal disease (ESRD) in Tennessee for the year 2000. With 33% of all cases representing new cases, a burden of disease will surely remain prevalent. Diabetes accounted for 43% of the new cases and, combined with hypertension, accounted for 72% of the new cases of ESRD.1 In addition, between the ages of 45 to 54, blacks are 3 times more likely to be overweight than the rest of the population, putting them at the highest risk for obesity-related health problems. In the year 2000, deaths because of diabetes were the fourth cause of death in blacks compared with the seventh cause of death in whites in Nashville and Davidson County.2 It is the sixth cause of death in the United States. However, the mortality rate for diabetes in Davidson County in the year 2000 for all races and gender was 31.2/100,000 population, 22.5/100,000 population for whites, and 71.6/100,000 population for blacks.2
In Nashville and Davidson County, blacks constitute 25.9% of the population but represent more than 50% of chronic dialysis patients.2 There are 11 in-center hemodialysis units in Davidson County. In addition, there are 2 peritoneal dialysis units. There are 6 additional units in areas surrounding Davidson County. The total number of transplants for Network 8 (Alabama, Mississippi, and Tennessee) was 712. Of that number, 251(35%) were in black patients.2 Medicaid pays only 90% of the cost of dialysis. Transplantation is yet another issue. Genetic match is just one answer to receiving access to organs for transplantation. Blacks as a group do not participate in organ donation at the rate of nonblacks.
Overall, in the United States, there are 1,321 cases of kidney disease per million people in population per year, and the cost of treatment approximates $60,000 per patient per year.1 The economic dimension of this disease burden is tremendous. The reliance on public sources to pay for needed heath care services for a large percentage of the population dictates that something must be done. After all, if kidney disease is diagnosed and treated early, ESRD and the need for dialysis and transplantation might be diminished or avoided.
Suppose I were to pose the question, is there a greater chance of eliminating health disparities by improving “access” via insurance coverage and/ or culturally competent health care providers? Clearly, kidney disease represents a disease of health disparity in diagnosis and treatment for blacks. The “invisible obvious” is lack of access to health care. In 1998, 12% of Nashville (15.9% of blacks) respondents to the Center for Disease Control’s Behavioral Risk Factor Surveillance Survey reported being uninsured. There was not a strong racial disparity seen in the survey, and consequently no evidence of disparate access, which begs for analysis of the methods and conclusions of this data. In the year 2000, 14% of the US population did not have health insurance, as reported by the US Census Bureau. Although insurance coverage is the first step to accessing the health care system, mostly in the form of employment-based, federal, or state programs, the affordability and comprehensiveness of benefits assuredly impact racial and ethnic minorities. Other factors include managed-care restrictions, lack of preventive health promotion as a benefit or omission, lack of providers, and lack of compliance.
In the year 2000, the ratio of licensed medical doctors to population in Nashville and Davidson County was 1:204, more favorable than the State of Tennessee (1:437) and the United States (1:355). This represents 4.9 physician providers per 1,000 population in Nashville, 2.3 in Tennessee, and 2.8 in the United States. The primary care physician to population ratio in Nashville was 1:842. There were 4.6 nurses or physician assistants for each doctor in Nashville. There are 7 black nephrologists in Tennessee, and 4 of these are in Nashville.
When the Nashville Consortium of Safety Net Providers looked at some outcome measures for diabetic patients in our community, (weight, systolic blood pressure, diastolic blood pressure, total cholesterol, low-density lipoprotein cholesterol, and HbA1c), they remained out of control range for patients receiving frequent primary doctor visits. When we look at service provision (eye examinations, Lower Extremity Amputation Program scores) less than 30% of patients meet the optimum. We have educated the public about the role of cholesterol in cardiovascular disease risk but not about the role of diabetes and hypertension in ESRD.
We know that treatment decisions are influenced by the patient’s race, ethnicity, and gender, and this begs the following question: are these providers able to provide culturally competent care to this population once access is attained? Without it, educational efforts will fail. And would this diminish the health disparity? Our health care system has to embrace the belief that culturally competent health care is one component of the key to quality and improved healthcare. This means health care that takes into consideration relevant cultural beliefs and traditions embraced by a group, and they are acknowledged and understood by the system before care is offered. It means addressing impaired social interaction and interpretation and impaired verbal and written communication. It means respecting the value systems of racial and ethnic minorities when such systems contrast with those of the majority.
Awareness is an important step toward addressing a problem in any group. The National Kidney Disease Education Program has plans in the near future to launch a pilot program of education and awareness in 4 cities with large black populations. The purpose is to, over a 1-year period, target this population with education and awareness in an attempt to change attitudes and beliefs and increase knowledge and practices regarding kidney disease. In the meantime, assurance of access and the need to focus on effective management of the problem consistent with best practices and evidence-based knowledge remain imperative and remain unaddressed. Clearly, all of these factors are operative, and it is just not possible at this time to assign the weight that each bears individually in answering this question.
Suppose I were to pose another question: is there a greater chance of eliminating end-stage kidney disease by managing hypertension, obesity, and diabetes? This presupposes that “access” is not the issue.
Our health care delivery system is mechanized and fragmented and is not designed to manage chronic disease, except when technology and sophisticated procedures play a crucial role in the management. The mechanisms for payment of health care do not incentivize the primary care physician to manage chronic disease. Medicine entered the academic medical school setting many decades ago. The teacher-investigator was born. Research became the focus of our medical institutions. This model should continue to exist because it has yielded a workforce and a body of knowledge and discovery that is matched by no other nation. It has transformed and brought unheralded improvement in our health care system. And consequently, our health care delivery system is best at managing acute illness or illness that involves technology challenge because it is designed to do so. Nonetheless, it has not ensured that all citizens have access. Shockingly sad, it does not provide quality care even to all who do have access, particularly for ethnic and racial minorities.
From where is the leadership to come to facilitate change?
A collective effort of stake holders, practitioners, health care institutions, government leaders, public agencies, and the community is needed to address the problem of health disparities. Kidney disease is no exception. We must redirect some of our focus and emphasize early diagnosis, intervention, management, and stabilization of chronic illness, which must include education and awareness of the target population. The trend toward outpatient management of most illnesses is aiding the evolution of chronic disease focus in our training programs. We must bring this focus centrally to our delivery system, through not only education and training but by including minority providers and professionals who have a vested interest in eliminating health disparities and in implementing public policies that will facilitate the efforts.
The best way to assure the stability and health of the total community is to assure the common welfare of everyone. The logical response to this problem is to involve everyone. Providers currently bear the socioeconomic burden and blame for health disparities. The community bears the burden of lost productivity and morbidity of it members. As providers and educators, we will not impact policy until we focus on generating the data that will compel those empowered to do so. Once the data are available, we, the providers, will still be faced with creating policy that will improve education and nutrition in schools and homes and ensure the same quality of care for everyone.
I believe that health disparities exist as a result of primarily socioeconomic (social referring to cultural and racial prejudice) disparity, secondarily because of access to care, and lastly because of biologic factors but, obviously multifactorial in cause. Note the message of the Institute of Medicine’s report: Unequal Treatment: What healthcare providers need to know about racial and ethnic disparities in healthcare. Let us take a fresh look at the health disparity problem, put a larger frame around the situation, understand it in its deeper context, and appreciate its often-paradoxical causes and consequences. Finally, we have to challenge conventional thinking and practice and present alternatives that complement the status quo. The best of us are not sure what to do, but we must do something.
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