American Journal of Transplantation 2014; 14: 1506–1511 Wiley Periodicals Inc.
Personal Viewpoint
C
Copyright 2014 The American Society of Transplantation and the American Society of Transplant Surgeons doi: 10.1111/ajt.12747
Kidney Transplant Access in the Southeastern United States: The Need for a Top-Down Transformation T. R. Srinivas* Transplant Nephrology Section, Division of Nephrology, Medical University of South Carolina, Charleston, SC Corresponding author: Titte R. Srinivas, [email protected]
End-stage renal disease (ESRD) and poverty are highly prevalent conditions in the Southeastern United States. The American Southeast also has some of the lowest attainments of health status among its constituents. Transplantation rates are particularly low in the Southeast compared with other regions of the United States. These low kidney transplantation rates in the Southeast likely reflect poor access to medical care. This disproportionate lack of access to medical care among ESRD patients in the Southeast reflects the convergence and interaction of socioeconomic and biologic forces at the patient level interacting with the financial and organizational structure of the healthcare system. Improving kidney transplant access in the Southeast will take disruptive political, financial and health system changes whose scope transcends transplant centers and dialysis units. Keywords: Disparities, economics, kidney transplantation, nephrology, social sciences Abbreviations: CCHRS, Cumulative Community Health Risk Score; CKD, chronic kidney disease; ESRD, endstage renal disease; GDP, gross domestic product; SRTR, Scientific Registry of Renal Transplant Recipients; USRDS, United States Renal Data System Received 05 February 2014, revised and accepted for publication 03 March 2014
Introduction The Southeastern United States is well recognized as the epicenter of the epidemic of metabolic syndrome, hypertension, chronic kidney disease (CKD), cardiovascular disease and end-stage renal disease (ESRD) (1–3). The incidence and prevalence of these conditions are inextricably linked to crippling levels of poverty, poor educational attainment and lack of access to healthcare at every level that unfortunately prevail in the Southeast (4). These socioeconomic challenges are particularly vexing in their 1506
disproportionally greater impact on African-Americans of low economic and educational attainment. These acknowledged disparities are further compounded by the fact that states in the US Southeast have adopted the political stance of not expanding Medicaid through provisions of the Affordable Care Act (5). It is not surprising, therefore, that kidney transplantation in the Southeast and, most importantly, equitable access to kidney transplantation, present a unique set of challenges that are only expected to intensify. In this issue of Am J Transplant, Patzer et al present their findings, borne of a commendable research effort focusing on United States Renal Data System (USRDS) data and data from USRDS Network 6, that collectively point to a rate of transplantation in the American Southeast significantly lower than that prevalent in the Northeastern United States (6). In a companion article, Patzer and Pastan discuss possible solutions to the vexingly low transplant rate in the Southeastern United States, which include, among others, the development of greater numbers of transplant centers and interventions at the level of dialysis centers (7). The intent of this article is to frame the argument of Patzer and Pastan (7) in the larger context of the state of health in the American Southeast and the economic environment in which transplantation takes place. An argument is made that increasing transplantation rates in the Southeastern United States will require a systematic integration of systems of care that can serve the poor outside the context of ESRD care with the systems that serve dialysis and transplantation. Sustainable operation of such a system will necessarily require a top-down approach in order to effect an uplift in the overall status of health of the region and access to healthcare that go beyond dialysis units, ESRD networks and transplant centers. Such a top-down approach will demand integration of the public health system with the systems of ESRD care. A brief synthesis of the impact of community health on transplant outcomes and processes is provided. Relevant studies pertinent to possible interventions are highlighted. An argument is then made that interventions that attempt to impact kidney transplant access will only be effective if these are economically sustainable.
The Need to Look Beyond Dialysis Units and Transplant Centers Dialysis units and transplant centers are siloed in their processes and scope of practice and their effectiveness is
Transplant Access and Community Health
compromised by the overall health of the communities that constitute their respective referral bases. Their focus thus far is on the provision of healthcare to each individual with ESRD and transplantation needs. This focus may need to be redirected so that the processes of ESRD care transplantation better interact with the greater context of the community within which they reside. Social factors, in particular poverty, education and social networks, are increasingly acknowledged as stronger determinants of the health of a population than healthcare (8). Currently, healthcare systems do not directly address social determinants of health, successful interaction of the healthcare system, in particular ESRD care and transplantation, with other systems that could address these issues merit consideration.
state, the health literacy of participants was low, with high rates of nonprivate insurance and a predominance of lowincome patients (Baliga P, personal communication; manuscript under review). This group has also identified differential responses to coping with the stress of ESRD across race and possible strategies to impact both candidacy and donation (13–15). Any intervention to improve successful navigation of the transplant system is an endeavor that is highly demanding of personnel and resources such as social workers and financial coordinators. Unfortunately, the current financial model does not provide for navigators and does not take into account the increasing personnel needs that attend transplantation of those with poor socioeconomic or educational attainment (see below).
Sox argues that a good example is provided by the US Veterans Administration that provides healthcare to veterans and underwrites costs of their education (9). Similarly, for low-income families, the Medicaid program and federally qualified health centers could provide healthcare, and the US education system could serve as a pathway to improved socioeconomic attainment (9). Sox further notes that these systems evolved in parallel but could provide components of a system of care that can synergize to improve the health of populations (9). The Veterans Administration and Medicaid programs represent top-down vertically integrated systems. Extrapolating these systems to the context of transplantation, such a vertically integrated system would need to involve a productive collaboration between the public health systems, the system of medical care (transplant centers and dialysis centers) and community resources.
Could increasing the number of transplant centers make travel to the transplant center a more viable option?
Unfortunately, ESRD is, more often than not, an unplanned event. Most patients with ESRD and their families are not prepared for the tremendous social upheaval that the onset of dialysis brings. This, coupled with high rates of poverty, low social adaptability and low educational attainment among the ESRD population, can make the task of navigating the medical system to successfully list for a transplant a highly failure-prone exercise (10). Single-center studies have shown that dropout from transplant evaluation and listing processes can be explained largely by race, lack of private insurance, low income and low educational attainment (11).
Community Health, Race and Poverty Impact Transplant Outcomes and Processes
Sullivan et al have demonstrated that patients who have been successfully transplanted can be employed as navigators to help ESRD patients seeking transplantation complete steps to successful listing for transplantation (12). The participants in this study were recruited from urban and suburban dialysis units and had much higher rates of educational attainment than is prevalent in the dialysis population of the Southeast. This study also did not report insurance status of the patients enrolled. In a transplant navigator study conducted in South Carolina, a largely rural
The epidemic of CKD and ESRD resides in communities that are plagued by poverty and high rates of low birthweight and low socioeconomic attainment and access to primary healthcare through adult life (4,18,19). Low birthweight and poverty have been linked to adult cardiovascular disease, likely through a posited pathogenetic link of reduced nephron endowment and proneness to hypertension (20). The direct relevance of this hypothesis, known as the ‘‘Barker hypothesis’’ after its main proponent, has been underscored by a study in the Southeast that
American Journal of Transplantation 2014; 14: 1506–1511
While it has been shown that the ability to travel, likely a product of greater social adaptability, has been shown as favorably associating with transplant outcomes, data from the US Southeast demonstrate that the distance a recipient has to travel to the transplant center does not affect transplant rates (16,17). As it stands currently, the ability of dialysis units and transplant centers to reach out and impact the health of communities in which their respective patient populations reside is limited. As such, a broader access to covered services and healthcare would need to accrue before the health of both donor and recipient populations is impacted.
Socioeconomic forces interact with biology Mere referral to transplantation and listing does not guarantee transplantation especially as the donor pool is finite. Increasing transplantation rates with increasing incident rates of ESRD will then need an increase in living donation. However, since living donation can only occur in a stringently certified state of predonation health, increased utilization of living donation cannot be realized when the overall health of the population is poor.
1507
Srinivas
showed a strong association between low birthweight and subsequent development of CKD and ESRD (18). Recent discoveries of genetic predisposition to progressive renal dysfunction among Blacks such as polymorphism in the APO-L1 gene add additional biological basis to these epidemiologic observations (21). Given the broad nature of this association, effects of a high community risk for hypertension and related issues would be expected to impact both the donor (living and deceased) and recipient populations with regard to transplantation. Putting these findings in the context of living donation, perceived risk to the donor on the part of both the donor and medical providers involved in the living donation process can impact the decision to donate. In studies performed in South Carolina it has been demonstrated that attitudes to living donation among donors, their families and medical providers significantly impact the decision to proceeding with living donation as much as medical risk factors identified in the donor evaluation process (14,22–24). These considerations impact the elasticity of donor organ supply in the face of ever increasing demand for transplants. Looking at these issues in the context of Patzer and Pastan’s (7) viewpoint further bolsters the argument to rethink the intersection between dialysis, transplantation and population health.
Community health impacts transplant outcomes and processes Community health can be measured through published county-level health statistics, and their impact on transplantation has been studied (25). County-level health statistics have been compiled from publicly available databases through a Robert Wood Johnson Foundation Project and the University of Wisconsin Population Health Institute (4). The data (in parentheses) comprising these county-level health statistics reflect several national registries that address the health of populations such as the National Center for Health Statistics (years of potential life lost; proportion of low birth weights), Behavioral Risk Factor Surveillance System (poor or fair reported health; poor reported mental health days; proportion of individuals reporting tobacco use), National Center for Chronic Disease Prevention and Health Promotion (adult obesity; physical inactivity proportions), Medicare/Dartmouth Institute (preventable hospital stays and screening for diabetes mellitus), National Assessment of Adult Literacy (illiteracy rates), and the US Census (median annual household income) (4). Schold et al utilized these statistics in combination with data from the Scientific Registry of Transplant Recipients (SRTR) and using zip codes of recipients in the SRTR (25). Using this methodology, the United States was divided into six strata by county-level health (Cumulative Community Health Risk Score [CCHRS]): Stratum I reflecting the best state of county-level health and Stratum VI reflecting the lowest level (Figure 1A) (25). As can be seen, the ESRD population in the US Southeast has some of the lowest levels of health using the CCHRS (25). 1508
The CCHRS showed a significant stepwise independent association with overall graft loss and patient death. In a subsequent study using the CCHRS, Schold et al (26) demonstrated that several transplant processes and outcomes were significantly impacted by levels of health in the community; higher levels of community health were associated with a greater likelihood of living donor transplantation, preemptive listing and lesser likelihood of inactive listing. Lower levels of county-level health were associated with increased waitlist mortality and increased rates of initial expanded criteria donor listing (Figure 1B) (26). Thus, the viewpoint that dialysis units and transplant centers— as they currently function—could hold the key to solving the problem of low transplant rates in the Southeast is likely counterintuitive in that causality is attributed to an association (27). The higher transplantation rates noted in the Northeast, associated with greater numbers of transplant centers in the Northeast, could merely reflect higher levels of overall health and educational attainment of the population and higher rates of living donation (Figure 1C). Waiting time reflects access to healthcare The steps toward successful transplantation are often depicted in the form of a cartoon that depicts the relevant milestones as points along a line that starts at ESRD onset and ends at transplantation. It has also been argued that waiting time may be modifiable (28). In fact when waiting time is partitioned into prelisting and postlisting components, the prelisting waiting time is affected by socioeconomic (insurance) and racial factors whereas postlisting time is largely determined by transplant center, level of sensitization and blood type. Prelisting time is greater with nonprivate insurance, poor educational attainment and among Blacks. Increasing prelisting ESRD duration is associated with a dose-dependent increase in posttransplant mortality (28). The impact of prelisting ESRD duration on transplant outcomes likely reflects the interplay of socioeconomic forces impacting access to care that is part and parcel of the process of preparation for transplantation as well as biological and physiological factors reflecting disease stage and severity (28). Given the different contributors to pre- and postlisting ESRD duration, interventions to lower these times would need to be targeted appropriately. The dose-dependent nature of prelisting ESRD duration on transplant outcomes suggests that lowering prelisting ESRD duration will impact transplant outcomes favorably (28). While race cannot be modified, access to adequate healthcare coverage could potentially help lower prelisting ESRD duration. Population health versus individual health: A need to look at what the shrinking healthcare dollar pays for The price of healthcare is fixed. Reimbursement is related to Medicare or private payer disbursements in almost American Journal of Transplantation 2014; 14: 1506–1511
Transplant Access and Community Health
Figure 1: (A) Variation in county-level health by state is shown. Tier I denotes the highest level of county-level health whereas Tier VI indicates the lowest level of county-level health. The Southeastern United States is characterized by low levels of county-level health. (B) Worsening state of health in the county impacts transplant outcomes. A dose-dependent increase in patient death (left) is translated into a correspondingly higher risk for overall graft loss across strata of county-level health. (C) Levels of health at the county-level impact transplant processes and outcomes. Higher levels of community health were associated with a greater likelihood of living donor transplantation, preemptive listing and lesser likelihood of inactive listing. Lower levels of county-level health were associated with increased waitlist mortality and increased rates of initial expanded criteria donor (ECD) listing. Adapted from references (25) and (26).
formulaic patterns (29). Despite the tremendous hype generated about the rising costs of healthcare, these rising costs are yet to be applied to personnel costs or reimbursement for services as they relate to the ESRD care and the transplant process. In fact most of the recent depictions of rising costs of healthcare take the form of healthcare costs shown as a percentage of the gross domestic product (GDP) (29). When adjusted for inflation and the shrinking GDP there has in fact been a net decrease in actual expenditure on healthcare (29). In this regard, staffing patterns in for-profit dialysis units may reflect market forces, demonstrating the difficulties in transplanting patients of low socioeconomic status that lack access to care (6). Given that the fixed healthcare dollar has alternate uses, if market forces alone were left to prevail, one would expect a disproportionate and adverse effect on populations with the highest need of ESRD care and American Journal of Transplantation 2014; 14: 1506–1511
transplantation services—poor blacks in the Southeast (9). Medicaid expansion improves the health of low-income adults, as has been highlighted by the work of Sommers et al, showing reduced mortality rates and improvement in access to care and self-reported health (30). Thus, the unfortunate political decision of Southern states to forgo Medicaid expansion further compounds existing disparities. The absence of substance in the political hype against Medicaid expansion has been highlighted in several Op-Ed articles by the Nobel Laureate, Paul Krugman, published by the New York Times, recent examples of which are referenced (31,32). It is also worth noting on the flipside that nominal entitlement to Medicaid expansion is also meaningless unless specific services and reimbursement that at least covers reasonable costs of care are disbursed to physicians and facilities. The prevailing reality is far from this expected ideal, as rates of reimbursement fall short of 1509
Srinivas
covering actual costs of care. If one looks at the current reimbursement schema, geography is used to determine reimbursement value units. These computations of value units accord lower rates of payment based on expected facility rent and cost of living in the Southeast. However, the present schema used to compute reimbursement value does not take into account either transplant outcomes or the cost of personnel that are needed to complete the transplant process successfully. Given the foregoing discussion on the difficulty in completing the transplant process that has been demonstrated among ESRD patients with suboptimal financial resources, it would seem most logical to make financial accommodations in the reimbursement schema in the areas of greatest need in the United States. However, the reality falls short of this obvious need.
Conclusion A top-down approach that integrates systems providing access to healthcare to the population at large with systems of ESRD care could hold the answer to improving transplant rates in the Southeastern United States. Increasing transplant rates in the Southeastern United States thus demand that the transplant community advocate for change beyond the dialysis unit and the transplant center. This need for advocacy by the transplant community is much more urgent given the politics that blocked Medicaid expansion in the US Southeast. Disruptive change in the financial model of healthcare and advocacy for broader access to healthcare at large are urgently needed to change the current reality of low transplant rates and the overall environment of ESRD care in the US Southeast.
Disclosure The author of this manuscript has no conflicts of interest to disclose as described by the American Journal of Transplantation.
References 1. Egan BM, Zhao Y, Axon RN. US trends in prevalence, awareness, treatment, and control of hypertension, 1988-2008. JAMA 2010; 303: 2043–2050. 2. USRDS. 2010 Annual data report: Atlas of chronic kidney disease and end-stage renal disease in the United States. Bethesda, MD: National Institutes of Health; National Institute of Diabetes and Digestive and Kidney Diseases, 2011. 3. Sampson UK, Edwards TL, Jahangir E, et al. Factors associated with the prevalence of hypertension in the southeastern United States: insights from 69 211 blacks and whites in the southern community cohort study. Circ Cardiovasc Qual Outcomes 2014; 7: 33–54. 4. Foundation RWJ. County health rankings. New Brunswick: Robert Wood Johnson Foundation, 2014.
1510
5. Berwick DM. The toxic politics of health care. JAMA 2013; 310: 1921–1922. 6. Patzer RE, Plantinga L, Krisher J, Pastan SO. Dialysis facility and network factors associated with low kidney transplantation rates among United States dialysis facilities. Am J Transplant 2014; 14: 1562–1572. 7. Patzer RE, Pastan SO. Kidney transplant access in the southeast: View from the bottom. Am J Transplant 2014; 14: 1499–1505. 8. Lynch J, Smith GD, Harper S, et al. Is income inequality a determinant of population helath? Part 1: A systematic review. Milbank Q 2004; 82: 5–99. 9. Sox HC. Resolving the tension between population health and individual health care. JAMA 2013; 310: 1933–1934. 10. Goldfarb-Rumyantzev AS, Sandhu GS, Baird BC, Khattak M, Barenbaum A, Hanto DW. Social Adaptability Index predicts access to kidney transplantation. Clin Transplant 2011; 25: 834–842. 11. Schold JD, Gregg JA, Harman JS, Hall AG, Patton PR, MeierKriesche HU. Barriers to evaluation and wait listing for kidney transplantation. Clin J Am Soc Nephrol 2011; 6: 1760–1767. 12. Sullivan C, Leon JB, Sayre SS, et al. Impact of navigators on completion of steps in the kidney transplant process: A randomized, controlled trial. Clin J Am Soc Nephrol 2012; 7: 1639– 1645. 13. Lunsford SL, Simpson KS, Chavin KD, et al. Racial differences in coping with the need for kidney transplantation and willingness to ask for live organ donation. Am J Kidney Dis 2006; 47: 324–331. 14. Lunsford SL, Shilling LM, Chavin KD, et al. Racial differences in the living kidney donation experience and implications for education. Prog Transplant 2007; 17: 234–240. 15. Sade RM, Kay N, Pitzer S, Drake P, Baliga P, Haines S. Increasing organ donation: A successful new concept. Transplantation 2002; 74: 1142–1146. 16. Axelrod DA, Dzebisashvili N, Schnitzler MA, et al. The interplay of socioeconomic status, distance to center, and interdonor service area travel on kidney transplant access and outcomes. Clin J Am Soc Nephrol 2010; 5: 2276–2288. 17. Patzer RE, Amaral S, Wasse H, Volkova N, Kleinbaum D, McClellan WM. Neighborhood poverty and racial disparities in kidney transplant waitlisting. J Am Soc Nephrol 2009; 20: 1333–1340. 18. Lackland DT, Bendall HE, Osmond C, Egan BM, Barker DJ. Low birth weights contribute to high rates of early-onset chronic renal failure in the Southeastern United States. Arch Intern Med 2000; 160: 1472–1476. 19. Lackland DT, Egan BM, Syddall HE, Barker DJ. Associations between birth weight and antihypertensive medication in black and white medicaid recipients. Hypertension 2002; 39: 179–183. 20. Barker DJ, Osmond C, Golding J, Kuh D, Wadsworth ME. Growth in utero, blood pressure in childhood and adult life, and mortality from cardiovascular disease. BMJ 1989; 298: 564–567. 21. Genovese G, Friedman DJ, Ross MD, et al. Association of trypanolytic ApoL1 variants with kidney disease in African Americans. Science 2010; 329: 841–845. 22. Lunsford SL, Simpson KS, Chavin KD, et al. Racial disparities in living kidney donation: Is there a lack of willing donors or an excess of medically unsuitable candidates? Transplantation 2006; 82: 876–881. 23. Shilling LM, Norman ML, Chavin KD, et al. Healthcare professionals’ perceptions of the barriers to living donor kidney transplantation among African Americans. J Natl Med Assoc 2006; 98: 834–840. 24. Lunsford SL, Simpson KS, Chavin KD, et al. Can family attributes explain the racial disparity in living kidney donation? Transplant Proc 2007; 39: 1376–1380.
American Journal of Transplantation 2014; 14: 1506–1511
Transplant Access and Community Health 25. Schold JD, Buccini LD, Kattan MW, et al. The association of community health indicators with outcomes for kidney transplant recipients in the United States. Archiv Surg 2012; 147: 520–526. 26. Schold JD, Heaphy EL, Buccini LD, et al. Prominent impact of community risk factors on kidney transplant candidate processes and outcomes. Am J Transplant 2013; 13: 2374–2383. 27. Hill AB. The environment and disease: Association or causation? Proc R Soc Med 1965; 58: 295–300. 28. Schold JD, Sehgal AR, Srinivas TR, Poggio ED, Navaneethan SD, Kaplan B. Marked variation of the association of ESRD duration
American Journal of Transplantation 2014; 14: 1506–1511
29.
30.
31. 32.
before and after wait listing on kidney transplant outcomes. Am J Transplant 2010; 10: 2008–2016. Moses H 3rd, Matheson DH, Dorsey ER, George BP, Sadoff D, Yoshimura S. The anatomy of health care in the United States. JAMA 2013, 310: 1947–1963. Sommers BD, Baicker K, Epstein AM. Mortality and access to care among adults after state Medicaid expansions. N Engl J Med 2012; 367: 1025–1034. Krugman PR. Health care horror hooey. The New York Times. 2014 Feb 23. Krugman PR. Delusions of failure. The New York Times. 2014 Feb 2.
1511
Personal Viewpoint
C
Copyright 2014 The American Society of Transplantation and the American Society of Transplant Surgeons doi: 10.1111/ajt.12747
Kidney Transplant Access in the Southeastern United States: The Need for a Top-Down Transformation T. R. Srinivas* Transplant Nephrology Section, Division of Nephrology, Medical University of South Carolina, Charleston, SC Corresponding author: Titte R. Srinivas, [email protected]
End-stage renal disease (ESRD) and poverty are highly prevalent conditions in the Southeastern United States. The American Southeast also has some of the lowest attainments of health status among its constituents. Transplantation rates are particularly low in the Southeast compared with other regions of the United States. These low kidney transplantation rates in the Southeast likely reflect poor access to medical care. This disproportionate lack of access to medical care among ESRD patients in the Southeast reflects the convergence and interaction of socioeconomic and biologic forces at the patient level interacting with the financial and organizational structure of the healthcare system. Improving kidney transplant access in the Southeast will take disruptive political, financial and health system changes whose scope transcends transplant centers and dialysis units. Keywords: Disparities, economics, kidney transplantation, nephrology, social sciences Abbreviations: CCHRS, Cumulative Community Health Risk Score; CKD, chronic kidney disease; ESRD, endstage renal disease; GDP, gross domestic product; SRTR, Scientific Registry of Renal Transplant Recipients; USRDS, United States Renal Data System Received 05 February 2014, revised and accepted for publication 03 March 2014
Introduction The Southeastern United States is well recognized as the epicenter of the epidemic of metabolic syndrome, hypertension, chronic kidney disease (CKD), cardiovascular disease and end-stage renal disease (ESRD) (1–3). The incidence and prevalence of these conditions are inextricably linked to crippling levels of poverty, poor educational attainment and lack of access to healthcare at every level that unfortunately prevail in the Southeast (4). These socioeconomic challenges are particularly vexing in their 1506
disproportionally greater impact on African-Americans of low economic and educational attainment. These acknowledged disparities are further compounded by the fact that states in the US Southeast have adopted the political stance of not expanding Medicaid through provisions of the Affordable Care Act (5). It is not surprising, therefore, that kidney transplantation in the Southeast and, most importantly, equitable access to kidney transplantation, present a unique set of challenges that are only expected to intensify. In this issue of Am J Transplant, Patzer et al present their findings, borne of a commendable research effort focusing on United States Renal Data System (USRDS) data and data from USRDS Network 6, that collectively point to a rate of transplantation in the American Southeast significantly lower than that prevalent in the Northeastern United States (6). In a companion article, Patzer and Pastan discuss possible solutions to the vexingly low transplant rate in the Southeastern United States, which include, among others, the development of greater numbers of transplant centers and interventions at the level of dialysis centers (7). The intent of this article is to frame the argument of Patzer and Pastan (7) in the larger context of the state of health in the American Southeast and the economic environment in which transplantation takes place. An argument is made that increasing transplantation rates in the Southeastern United States will require a systematic integration of systems of care that can serve the poor outside the context of ESRD care with the systems that serve dialysis and transplantation. Sustainable operation of such a system will necessarily require a top-down approach in order to effect an uplift in the overall status of health of the region and access to healthcare that go beyond dialysis units, ESRD networks and transplant centers. Such a top-down approach will demand integration of the public health system with the systems of ESRD care. A brief synthesis of the impact of community health on transplant outcomes and processes is provided. Relevant studies pertinent to possible interventions are highlighted. An argument is then made that interventions that attempt to impact kidney transplant access will only be effective if these are economically sustainable.
The Need to Look Beyond Dialysis Units and Transplant Centers Dialysis units and transplant centers are siloed in their processes and scope of practice and their effectiveness is
Transplant Access and Community Health
compromised by the overall health of the communities that constitute their respective referral bases. Their focus thus far is on the provision of healthcare to each individual with ESRD and transplantation needs. This focus may need to be redirected so that the processes of ESRD care transplantation better interact with the greater context of the community within which they reside. Social factors, in particular poverty, education and social networks, are increasingly acknowledged as stronger determinants of the health of a population than healthcare (8). Currently, healthcare systems do not directly address social determinants of health, successful interaction of the healthcare system, in particular ESRD care and transplantation, with other systems that could address these issues merit consideration.
state, the health literacy of participants was low, with high rates of nonprivate insurance and a predominance of lowincome patients (Baliga P, personal communication; manuscript under review). This group has also identified differential responses to coping with the stress of ESRD across race and possible strategies to impact both candidacy and donation (13–15). Any intervention to improve successful navigation of the transplant system is an endeavor that is highly demanding of personnel and resources such as social workers and financial coordinators. Unfortunately, the current financial model does not provide for navigators and does not take into account the increasing personnel needs that attend transplantation of those with poor socioeconomic or educational attainment (see below).
Sox argues that a good example is provided by the US Veterans Administration that provides healthcare to veterans and underwrites costs of their education (9). Similarly, for low-income families, the Medicaid program and federally qualified health centers could provide healthcare, and the US education system could serve as a pathway to improved socioeconomic attainment (9). Sox further notes that these systems evolved in parallel but could provide components of a system of care that can synergize to improve the health of populations (9). The Veterans Administration and Medicaid programs represent top-down vertically integrated systems. Extrapolating these systems to the context of transplantation, such a vertically integrated system would need to involve a productive collaboration between the public health systems, the system of medical care (transplant centers and dialysis centers) and community resources.
Could increasing the number of transplant centers make travel to the transplant center a more viable option?
Unfortunately, ESRD is, more often than not, an unplanned event. Most patients with ESRD and their families are not prepared for the tremendous social upheaval that the onset of dialysis brings. This, coupled with high rates of poverty, low social adaptability and low educational attainment among the ESRD population, can make the task of navigating the medical system to successfully list for a transplant a highly failure-prone exercise (10). Single-center studies have shown that dropout from transplant evaluation and listing processes can be explained largely by race, lack of private insurance, low income and low educational attainment (11).
Community Health, Race and Poverty Impact Transplant Outcomes and Processes
Sullivan et al have demonstrated that patients who have been successfully transplanted can be employed as navigators to help ESRD patients seeking transplantation complete steps to successful listing for transplantation (12). The participants in this study were recruited from urban and suburban dialysis units and had much higher rates of educational attainment than is prevalent in the dialysis population of the Southeast. This study also did not report insurance status of the patients enrolled. In a transplant navigator study conducted in South Carolina, a largely rural
The epidemic of CKD and ESRD resides in communities that are plagued by poverty and high rates of low birthweight and low socioeconomic attainment and access to primary healthcare through adult life (4,18,19). Low birthweight and poverty have been linked to adult cardiovascular disease, likely through a posited pathogenetic link of reduced nephron endowment and proneness to hypertension (20). The direct relevance of this hypothesis, known as the ‘‘Barker hypothesis’’ after its main proponent, has been underscored by a study in the Southeast that
American Journal of Transplantation 2014; 14: 1506–1511
While it has been shown that the ability to travel, likely a product of greater social adaptability, has been shown as favorably associating with transplant outcomes, data from the US Southeast demonstrate that the distance a recipient has to travel to the transplant center does not affect transplant rates (16,17). As it stands currently, the ability of dialysis units and transplant centers to reach out and impact the health of communities in which their respective patient populations reside is limited. As such, a broader access to covered services and healthcare would need to accrue before the health of both donor and recipient populations is impacted.
Socioeconomic forces interact with biology Mere referral to transplantation and listing does not guarantee transplantation especially as the donor pool is finite. Increasing transplantation rates with increasing incident rates of ESRD will then need an increase in living donation. However, since living donation can only occur in a stringently certified state of predonation health, increased utilization of living donation cannot be realized when the overall health of the population is poor.
1507
Srinivas
showed a strong association between low birthweight and subsequent development of CKD and ESRD (18). Recent discoveries of genetic predisposition to progressive renal dysfunction among Blacks such as polymorphism in the APO-L1 gene add additional biological basis to these epidemiologic observations (21). Given the broad nature of this association, effects of a high community risk for hypertension and related issues would be expected to impact both the donor (living and deceased) and recipient populations with regard to transplantation. Putting these findings in the context of living donation, perceived risk to the donor on the part of both the donor and medical providers involved in the living donation process can impact the decision to donate. In studies performed in South Carolina it has been demonstrated that attitudes to living donation among donors, their families and medical providers significantly impact the decision to proceeding with living donation as much as medical risk factors identified in the donor evaluation process (14,22–24). These considerations impact the elasticity of donor organ supply in the face of ever increasing demand for transplants. Looking at these issues in the context of Patzer and Pastan’s (7) viewpoint further bolsters the argument to rethink the intersection between dialysis, transplantation and population health.
Community health impacts transplant outcomes and processes Community health can be measured through published county-level health statistics, and their impact on transplantation has been studied (25). County-level health statistics have been compiled from publicly available databases through a Robert Wood Johnson Foundation Project and the University of Wisconsin Population Health Institute (4). The data (in parentheses) comprising these county-level health statistics reflect several national registries that address the health of populations such as the National Center for Health Statistics (years of potential life lost; proportion of low birth weights), Behavioral Risk Factor Surveillance System (poor or fair reported health; poor reported mental health days; proportion of individuals reporting tobacco use), National Center for Chronic Disease Prevention and Health Promotion (adult obesity; physical inactivity proportions), Medicare/Dartmouth Institute (preventable hospital stays and screening for diabetes mellitus), National Assessment of Adult Literacy (illiteracy rates), and the US Census (median annual household income) (4). Schold et al utilized these statistics in combination with data from the Scientific Registry of Transplant Recipients (SRTR) and using zip codes of recipients in the SRTR (25). Using this methodology, the United States was divided into six strata by county-level health (Cumulative Community Health Risk Score [CCHRS]): Stratum I reflecting the best state of county-level health and Stratum VI reflecting the lowest level (Figure 1A) (25). As can be seen, the ESRD population in the US Southeast has some of the lowest levels of health using the CCHRS (25). 1508
The CCHRS showed a significant stepwise independent association with overall graft loss and patient death. In a subsequent study using the CCHRS, Schold et al (26) demonstrated that several transplant processes and outcomes were significantly impacted by levels of health in the community; higher levels of community health were associated with a greater likelihood of living donor transplantation, preemptive listing and lesser likelihood of inactive listing. Lower levels of county-level health were associated with increased waitlist mortality and increased rates of initial expanded criteria donor listing (Figure 1B) (26). Thus, the viewpoint that dialysis units and transplant centers— as they currently function—could hold the key to solving the problem of low transplant rates in the Southeast is likely counterintuitive in that causality is attributed to an association (27). The higher transplantation rates noted in the Northeast, associated with greater numbers of transplant centers in the Northeast, could merely reflect higher levels of overall health and educational attainment of the population and higher rates of living donation (Figure 1C). Waiting time reflects access to healthcare The steps toward successful transplantation are often depicted in the form of a cartoon that depicts the relevant milestones as points along a line that starts at ESRD onset and ends at transplantation. It has also been argued that waiting time may be modifiable (28). In fact when waiting time is partitioned into prelisting and postlisting components, the prelisting waiting time is affected by socioeconomic (insurance) and racial factors whereas postlisting time is largely determined by transplant center, level of sensitization and blood type. Prelisting time is greater with nonprivate insurance, poor educational attainment and among Blacks. Increasing prelisting ESRD duration is associated with a dose-dependent increase in posttransplant mortality (28). The impact of prelisting ESRD duration on transplant outcomes likely reflects the interplay of socioeconomic forces impacting access to care that is part and parcel of the process of preparation for transplantation as well as biological and physiological factors reflecting disease stage and severity (28). Given the different contributors to pre- and postlisting ESRD duration, interventions to lower these times would need to be targeted appropriately. The dose-dependent nature of prelisting ESRD duration on transplant outcomes suggests that lowering prelisting ESRD duration will impact transplant outcomes favorably (28). While race cannot be modified, access to adequate healthcare coverage could potentially help lower prelisting ESRD duration. Population health versus individual health: A need to look at what the shrinking healthcare dollar pays for The price of healthcare is fixed. Reimbursement is related to Medicare or private payer disbursements in almost American Journal of Transplantation 2014; 14: 1506–1511
Transplant Access and Community Health
Figure 1: (A) Variation in county-level health by state is shown. Tier I denotes the highest level of county-level health whereas Tier VI indicates the lowest level of county-level health. The Southeastern United States is characterized by low levels of county-level health. (B) Worsening state of health in the county impacts transplant outcomes. A dose-dependent increase in patient death (left) is translated into a correspondingly higher risk for overall graft loss across strata of county-level health. (C) Levels of health at the county-level impact transplant processes and outcomes. Higher levels of community health were associated with a greater likelihood of living donor transplantation, preemptive listing and lesser likelihood of inactive listing. Lower levels of county-level health were associated with increased waitlist mortality and increased rates of initial expanded criteria donor (ECD) listing. Adapted from references (25) and (26).
formulaic patterns (29). Despite the tremendous hype generated about the rising costs of healthcare, these rising costs are yet to be applied to personnel costs or reimbursement for services as they relate to the ESRD care and the transplant process. In fact most of the recent depictions of rising costs of healthcare take the form of healthcare costs shown as a percentage of the gross domestic product (GDP) (29). When adjusted for inflation and the shrinking GDP there has in fact been a net decrease in actual expenditure on healthcare (29). In this regard, staffing patterns in for-profit dialysis units may reflect market forces, demonstrating the difficulties in transplanting patients of low socioeconomic status that lack access to care (6). Given that the fixed healthcare dollar has alternate uses, if market forces alone were left to prevail, one would expect a disproportionate and adverse effect on populations with the highest need of ESRD care and American Journal of Transplantation 2014; 14: 1506–1511
transplantation services—poor blacks in the Southeast (9). Medicaid expansion improves the health of low-income adults, as has been highlighted by the work of Sommers et al, showing reduced mortality rates and improvement in access to care and self-reported health (30). Thus, the unfortunate political decision of Southern states to forgo Medicaid expansion further compounds existing disparities. The absence of substance in the political hype against Medicaid expansion has been highlighted in several Op-Ed articles by the Nobel Laureate, Paul Krugman, published by the New York Times, recent examples of which are referenced (31,32). It is also worth noting on the flipside that nominal entitlement to Medicaid expansion is also meaningless unless specific services and reimbursement that at least covers reasonable costs of care are disbursed to physicians and facilities. The prevailing reality is far from this expected ideal, as rates of reimbursement fall short of 1509
Srinivas
covering actual costs of care. If one looks at the current reimbursement schema, geography is used to determine reimbursement value units. These computations of value units accord lower rates of payment based on expected facility rent and cost of living in the Southeast. However, the present schema used to compute reimbursement value does not take into account either transplant outcomes or the cost of personnel that are needed to complete the transplant process successfully. Given the foregoing discussion on the difficulty in completing the transplant process that has been demonstrated among ESRD patients with suboptimal financial resources, it would seem most logical to make financial accommodations in the reimbursement schema in the areas of greatest need in the United States. However, the reality falls short of this obvious need.
Conclusion A top-down approach that integrates systems providing access to healthcare to the population at large with systems of ESRD care could hold the answer to improving transplant rates in the Southeastern United States. Increasing transplant rates in the Southeastern United States thus demand that the transplant community advocate for change beyond the dialysis unit and the transplant center. This need for advocacy by the transplant community is much more urgent given the politics that blocked Medicaid expansion in the US Southeast. Disruptive change in the financial model of healthcare and advocacy for broader access to healthcare at large are urgently needed to change the current reality of low transplant rates and the overall environment of ESRD care in the US Southeast.
Disclosure The author of this manuscript has no conflicts of interest to disclose as described by the American Journal of Transplantation.
References 1. Egan BM, Zhao Y, Axon RN. US trends in prevalence, awareness, treatment, and control of hypertension, 1988-2008. JAMA 2010; 303: 2043–2050. 2. USRDS. 2010 Annual data report: Atlas of chronic kidney disease and end-stage renal disease in the United States. Bethesda, MD: National Institutes of Health; National Institute of Diabetes and Digestive and Kidney Diseases, 2011. 3. Sampson UK, Edwards TL, Jahangir E, et al. Factors associated with the prevalence of hypertension in the southeastern United States: insights from 69 211 blacks and whites in the southern community cohort study. Circ Cardiovasc Qual Outcomes 2014; 7: 33–54. 4. Foundation RWJ. County health rankings. New Brunswick: Robert Wood Johnson Foundation, 2014.
1510
5. Berwick DM. The toxic politics of health care. JAMA 2013; 310: 1921–1922. 6. Patzer RE, Plantinga L, Krisher J, Pastan SO. Dialysis facility and network factors associated with low kidney transplantation rates among United States dialysis facilities. Am J Transplant 2014; 14: 1562–1572. 7. Patzer RE, Pastan SO. Kidney transplant access in the southeast: View from the bottom. Am J Transplant 2014; 14: 1499–1505. 8. Lynch J, Smith GD, Harper S, et al. Is income inequality a determinant of population helath? Part 1: A systematic review. Milbank Q 2004; 82: 5–99. 9. Sox HC. Resolving the tension between population health and individual health care. JAMA 2013; 310: 1933–1934. 10. Goldfarb-Rumyantzev AS, Sandhu GS, Baird BC, Khattak M, Barenbaum A, Hanto DW. Social Adaptability Index predicts access to kidney transplantation. Clin Transplant 2011; 25: 834–842. 11. Schold JD, Gregg JA, Harman JS, Hall AG, Patton PR, MeierKriesche HU. Barriers to evaluation and wait listing for kidney transplantation. Clin J Am Soc Nephrol 2011; 6: 1760–1767. 12. Sullivan C, Leon JB, Sayre SS, et al. Impact of navigators on completion of steps in the kidney transplant process: A randomized, controlled trial. Clin J Am Soc Nephrol 2012; 7: 1639– 1645. 13. Lunsford SL, Simpson KS, Chavin KD, et al. Racial differences in coping with the need for kidney transplantation and willingness to ask for live organ donation. Am J Kidney Dis 2006; 47: 324–331. 14. Lunsford SL, Shilling LM, Chavin KD, et al. Racial differences in the living kidney donation experience and implications for education. Prog Transplant 2007; 17: 234–240. 15. Sade RM, Kay N, Pitzer S, Drake P, Baliga P, Haines S. Increasing organ donation: A successful new concept. Transplantation 2002; 74: 1142–1146. 16. Axelrod DA, Dzebisashvili N, Schnitzler MA, et al. The interplay of socioeconomic status, distance to center, and interdonor service area travel on kidney transplant access and outcomes. Clin J Am Soc Nephrol 2010; 5: 2276–2288. 17. Patzer RE, Amaral S, Wasse H, Volkova N, Kleinbaum D, McClellan WM. Neighborhood poverty and racial disparities in kidney transplant waitlisting. J Am Soc Nephrol 2009; 20: 1333–1340. 18. Lackland DT, Bendall HE, Osmond C, Egan BM, Barker DJ. Low birth weights contribute to high rates of early-onset chronic renal failure in the Southeastern United States. Arch Intern Med 2000; 160: 1472–1476. 19. Lackland DT, Egan BM, Syddall HE, Barker DJ. Associations between birth weight and antihypertensive medication in black and white medicaid recipients. Hypertension 2002; 39: 179–183. 20. Barker DJ, Osmond C, Golding J, Kuh D, Wadsworth ME. Growth in utero, blood pressure in childhood and adult life, and mortality from cardiovascular disease. BMJ 1989; 298: 564–567. 21. Genovese G, Friedman DJ, Ross MD, et al. Association of trypanolytic ApoL1 variants with kidney disease in African Americans. Science 2010; 329: 841–845. 22. Lunsford SL, Simpson KS, Chavin KD, et al. Racial disparities in living kidney donation: Is there a lack of willing donors or an excess of medically unsuitable candidates? Transplantation 2006; 82: 876–881. 23. Shilling LM, Norman ML, Chavin KD, et al. Healthcare professionals’ perceptions of the barriers to living donor kidney transplantation among African Americans. J Natl Med Assoc 2006; 98: 834–840. 24. Lunsford SL, Simpson KS, Chavin KD, et al. Can family attributes explain the racial disparity in living kidney donation? Transplant Proc 2007; 39: 1376–1380.
American Journal of Transplantation 2014; 14: 1506–1511
Transplant Access and Community Health 25. Schold JD, Buccini LD, Kattan MW, et al. The association of community health indicators with outcomes for kidney transplant recipients in the United States. Archiv Surg 2012; 147: 520–526. 26. Schold JD, Heaphy EL, Buccini LD, et al. Prominent impact of community risk factors on kidney transplant candidate processes and outcomes. Am J Transplant 2013; 13: 2374–2383. 27. Hill AB. The environment and disease: Association or causation? Proc R Soc Med 1965; 58: 295–300. 28. Schold JD, Sehgal AR, Srinivas TR, Poggio ED, Navaneethan SD, Kaplan B. Marked variation of the association of ESRD duration
American Journal of Transplantation 2014; 14: 1506–1511
29.
30.
31. 32.
before and after wait listing on kidney transplant outcomes. Am J Transplant 2010; 10: 2008–2016. Moses H 3rd, Matheson DH, Dorsey ER, George BP, Sadoff D, Yoshimura S. The anatomy of health care in the United States. JAMA 2013, 310: 1947–1963. Sommers BD, Baicker K, Epstein AM. Mortality and access to care among adults after state Medicaid expansions. N Engl J Med 2012; 367: 1025–1034. Krugman PR. Health care horror hooey. The New York Times. 2014 Feb 23. Krugman PR. Delusions of failure. The New York Times. 2014 Feb 2.
1511
