Andrea Kelley
SB 829
March 13, 2012
Assignment 1
The National Kidney Foundation reports that 26 million Americans have chronic kidney
disease, a condition that often leads to kidney failure or end stage renal disease (ESRD).1 Malek,
Keys, Kumar, Milford, and Tullius reported that by the end of 2010, 700,000 people in the United
States were predicted to advance to ESRD from chronic kidney disease.2 The overall Medicare
cost for managing ESRD was $17 billion in 2002.3
For patients with end stage renal disease (ESRD), continued well-being depends on
critical treatments: either dialysis or kidney transplantation. Due to the shortage of organs, most
patients will progress to dialysis before transplantation. While dialysis does lead to patients
feeling improvement, it has some negative aspects as well. While receiving dialysis, a patient is
either committing to a time-consuming home treatment (peritoneal dialysis) or an average of nine
hours per week at a dialysis center for hemodialysis. Access to kidney transplantation offers
possible improvement of patients' health and lifestyle. Transplantation has been shown to
increase a patient's longevity, lead to lower cost of healthcare, and improvement to quality of
life.4
Considering the patient population in the United States, there is a disproportionate
number of black Americans with ESRD. In the year 2000, blacks represented 12.7% of the U.S.
population and 32% of the ESRD patient population.5 African Americans had a four-fold
increase in the incidence of ESRD when compared to the Caucasian population.6
Of those patients pursuing a transplant, 33% are African American and over 50% are
ethnic minorities. While waiting for their transplants, the mortality rate is twice that for nonwhite patients as it is for white patients and white patients overall receive their transplants
sooner.7 In a study reviewing transplant rates for patients in Wisconsin, the authors found that
African American patients diagnosed with ESRD between 1982 and 1985 were 35% less likely to
receive a kidney transplant than their white counterparts. This rate worsened with time – patients
diagnosed between 2001 and 2005 who were African American were 74% less likely to be
transplanted.8 Several studies found that non-white and African American patients had a
transplant rate approximately half of that of whites.9 One study in the Southeast found the
1 “Kidney Disease,” National Kidney Foundation, accessed March 11, 2012,
http://www.kidney.org/kidneyDisease/.
2 Sayeed K. Malek et al., “Racial and Ethnic Disparities in Kidney Transplantation,” Transplant International 24
(2010): 420, Accessed March 1, 2012, doi:10.1111/j.1432-2277.2010.01205.x
3 R. S. D. Higgins and J. A. Fishman, “Disparities in Solid Organ Transplantation for Ethnic Minorities: Facts and
Solutions,” American Journal of Transplantation 6 (2006): 2556.
4 G. Caleb Alexander and Ashwini R. Seghal, “Why Hemodialysis Patients Fail to Complete the Transplantation
Process,” American Journal of Kidney Disease 37 (2001): 321.
5 Joanne M. Churak, “Racial and Ethnic Disparities in Renal Transplantation,” Journal of the National Medical
Association, 97 (2005): 153.
6 Higgins and Fishman, “Solid Organ Transplantation,” 2556.
7 Malek, “Disparities in Kidney,” 419.
8 Kelly L. Stolzmann et al., “Trends in Kidney Transplantation Rates and Disparities,” Journal of the National
Medical Association, 99 (2007): 927-928.
9 Eszter Panna Vamos, Marta Novak and Istvan Mucsi, “Non-Medical Factors Influencing Access to Renal
Transplantation,” International Urology Nephrology, 41 (2009): 608, Accessed March 11, 2012, DOI
transplant rate to be 59% less for African Americans and that there were disparities throughout
the steps of the transplant process.10 Of transplanted African Americans, the average national
time of the waiting list was 1,335 days compared to 734 days on average for Caucasian
patients.11 Having a shorter waiting time is important because earlier transplants have been
shown to be related to a better prognosis overall.12
Another significant and sometimes overlapping demographic that impedes access to a
renal transplant is low socioeconomic status. In the study of the Southeastern transplant center
mentioned previously, the authors sought to examine whether poverty accounted for the racial
disparities in transplantation. While income level did not account for all disparities, it was
considered to be explanatory in about one third of African Americans surveyed.13 A number of
other studies have indicated that socioeconomic status acts as a potential barrier to
transplantation.14 One study suggested that patients with high income were five times as likely to
receive a transplant as those in the low income bracket.15 Therefore, the ideal target audience for
the intervention is African American adults with low socioeconomic status diagnosed with
ESRD.
Examining the causes of the disparity reveals a multifaceted and complex issue. There
are a number of biological and genetic factors that are cited as contributing to the decreased
transplants among the African American population. Transplant protocol requires matching by
ABO blood type and human leukocyte antigen (HLA). In patients with ESRD waiting for renal
transplant, most African Americans have blood group B or O which has a wait time twice that of
patients with group A and four times that of AB.16 Additionally, African American patients have
been shown to have increased immunological response and require more closely matched HLA
typing.17 Illnesses that lead to ESRD and can complicate renal transplantation are also higher in
the African American community, including diabetes and hypertension.18 Due to the lower rates
of organ donation by the black population, it can be harder to find a good match.19
In addition to the genetic factors of the patients and donor pool, there are causes to be
found within the medical community. One report suggests that internalized racism may be a
factor in the decreased numbers of black patients being referred to the transplant evaluation. The
youngest black candidates were 40% less likely to be listed than similar white patients and the
healthiest black candidates were 50% less likely.20 In a study of physician opinions,
nephrologists were less likely to believe that kidney transplant equaled better survival rates for
10.1007/s11255-009-9553-x
10 R.E. Patzer et al., “The Role of Race and Poverty on Steps to Kidney Transplantation in the Southeastern United
States,” American Journal of Transplantation, 12 (2012): 358. Accessed on March 10, 2012 doi: 10.1111/j.16006143.2011.03927.x
11 Clarence E. Foster III et al., “A Decade of Experience With Renal Transplantation in African-Americans,” Annals
of Surgery, 236 (2002): 794.
12 Stolzmann at el., “Trends in Kidney,” 923.
13 Patzer et al., “The Role of Race,” 358.
14 Sankar D. Navaneethana and Sonal Singh, “A systematic review of barriers in access to renal transplantation
among African Americans in the United States,” Clinical Transplantation, 20 (2006): 772, Accessed on March 3,
2012 DOI: 10.1111/j.1399-0012.2006.00568.x
15 Churak, “Disparities in Renal,” 153.
16 Vamos, Novak and Mucsi, “Non-Medical Factors,” 612.
17 Malek, “Disparities in Kidney,” 421.
18 Malek, “Disparities in Kidney,” 419.
19 Churak, “Disparities in Renal,” 156.
20 Churak, “Disparities in Renal,” 152.
black patients than for white patients. They also believed there was less improvement in quality
of life for African American patients than Caucasian, although that difference was smaller. 21
Physicians' beliefs about the benefits of transplantation for a certain population can affect their
referral rates for that group.
Other environmental causes include inadequate health insurance, lack of donors both live
and cadaveric, and lack of education at dialysis centers. In some studies, authors use lack of
health insurance as a stand-in for low socioeconomic status. Since insurance coverage is often a
requirement for activation on the transplant waiting list, patients' access may be impeded by lack
of or inadequate health insurance. As discussed previously, there is a smaller percentage of black
organ donors both living and cadaveric. Some sources attribute this difference to religious ideals
in the black community.22 Finally, one study found that patients who were listed as “uninformed”
about the transplant benefit on Medicare forms had a 53% lower rate of access to
transplantation.23 In this study, African Americans were 27% more likely to judge
psychologically unfit for transplant, and therefore not informed of the benefit. Another study
found white and black patients to be equal in number informed of transplantation, but the
informed only totaled half of patients.24
In the ecological model, both environmental and individual factors should be considered.
In addition to biologic and genetic factors that were listed previously, a number of individual
behaviors are connected to the disparate rates of renal transplantation. One aspect is the black
patient's interest in receiving a transplant. Churak suggests that patients' focus on managing
current problems and multiple stressors, combined with a lack of knowledge about the benefits,
may lead patients to not prioritize following through with the transplant process.25 Considering
the lower rate of live donors for African American patients, it has been posited that their
perception may influence the likelihood of asking or persuading people to be donors.26 Black
patients have been reported to have better energy levels and satisfaction with dialysis overall,
which may also contribute to them not completing the transplant evaluation.27 Failure to
complete the transplant evaluation is one of the major reasons attributed to lower rates of listing
for black patients. In comparing the pathway through the transplant evaluation for black and
white patients, one study found that blacks were more likely to get stuck at all the steps in the
process.28 Some factors that may contribute to patients failing to progress through the evaluation
or get listed include actual or perceived substance abuse, housing instability, lack of medical
compliance, and mistrust of the medical system.29
Several studies indicate the increased education and health literacy lead to increased
21 Ayanian et al., “Physicians’ Beliefs About Racial Differences in Referral for Renal Transplantation,” American
Jounral of Kidney Diseases, 43 (2004): 353.
22 Vamos, Novak and Mucsi, “Non-Medical Factors,” 611.
23 L. M. Kucirka et al., “Disparities in Provision of Transplant Information Affect Access to Kidney
Transplantation,” American Jounral of Transplantation 12 (2012): 351, Accessed on March 2, 2012, doi:
10.1111/j.1600-6143.2011.03865.x
24 N. G. Kutner et al., “Perspectives on the New Kidney Disease Education Benefit: Early Awareness, Race and
Kidney Transplant Access in a USRDS Study,” American Journal of Transplantation Jan 6, 2012, Accessed on
March 2, 2012, doi: 10.1111/j.1600-6143.2011.03898.x
25 Churak, “Disparities in Renal,” 156.
26 J. L. Gore et al., “Disparities in the Utilization of Live Donor Renal Transplantation,” American Journal of
Transplantation 9 (2009): 1130, Accessed on March 2, 2012, doi: 10.1111/j.1600-6143.2009.02620.x
27 Navaneethana and Singh, “A systematic review of barriers,” 771.
28 Alexander and Seghal, “Why Hemodialysis Patients,” 325.
29 Churak, “Disparities in Renal”
access. When patients at one center were compared for education level, it was shown that there
was a link between racial disparities and level of education.30 The authors suggest that mediating
the effect of formal education level through targeted interventions can reduce the racial
disparities in transplantation. An assessment of one center's dialysis patients found that lack of
health literacy led to lower rates of referral for transplant and suggest that this is an area for
potential intervention.31 A program conducted at the University of Maryland designed to
improve renal transplant rates and reduce waiting time for black patients included targeted
education at physician offices and dialysis centers. Their results indicated that such a program
could be effective.32
Given the many factors that interact in this health disparity, it is important to consider
areas that are changeable. Genetic factors in the patient cannot be easily addressed by a public
health program, but rather call for scientific advances in immunosuppressant medicine.
Insurance coverage is an area of constant debate in the United States currently. If the Affordable
Care Act in enacted, many of the patients who are currently ineligible due to inadequate
insurance coverage may become eligible. Some of the long standing issues that face African
Americans, including institutional racism, poverty, housing instability, poor diet, lack of exercise,
and higher prevalence of certain illnesses are areas that may be addressed in an intervention, but
for the purpose of feasibility are excluded here. Similarly, programs to address lower rates of
organ donation in the black community have been shown to be effective in the past but would
pull focus from other objectives proposed here. It may be an area for future expansion of the
intervention program.
The proposed intervention will focus on improving access to transplantation for African
American adults with low socioeconomic status. Targeted determinants include of lack of health
literacy, knowledge about treatment options for ESRD and perception of poor relationships with
providers. Due to the success of previous efforts focusing on the determinant of health literacy
and knowledge of transplantation, this is a fertile area for intervention. Change objectives on the
individual level include understanding treatment options, discussing the transplant process with
providers, gaining confidence in discussing medical treatment, asking and informing live donors
of the process. This will give black ESRD patients the ability to be more proactive in their health
care overall and with transplantation in particular. While previous encounters with the medical
profession may have left black patients with the sense that they are powerless, this intervention
would encourage them to be good advocates for themselves. Once patients have greater
awareness of the benefits of transplant, this will lead to them seeking services that they desire
and approach their loved ones as potential donors. Additionally, the ability to advocate for
themselves will help to mitigate any provider biases that lead providers to overlook black patients
when referring for transplant evaluations.
The strategies for these change objectives include one-on-one information sessions with
targeted patients in dialysis centers, instruction in communication techniques with providers,
individualized planning with patients, and a review of methods to discuss difficult topics with
loved ones. Considering that African American patients are less likely to advance through the
steps of an evaluation, use of the trans-theoretical model may address any resistance of the
30 Alexander S. Goldfarb-Rumyantzev et al., “Effect of education on racial disparities in access to kidney
transplantation,” Clinical Transplantation 26 (2012): 79, Accessed on March 12, 2012, DOI: 10.1111/j.13990012.2010.01390.x
31 Vanessa Grubbs et al., “Health Literacy and Access to Kidney Transplantation,” Clinical Journal of the American
Society of Nephrology 4 (2009): 195, Accessed on March 12, 2012 doi: 10.2215/CJN.03290708
32 Foster III et al., “A Decade of Experience.”
patient and uncover the reasons for failing to advance. This model is helpful is considering all of
the strategies mentioned, but will particularly effective when engaging in one-on-one planning
sessions with low income African American patients. Another model to utilize is that of social
networks. As more targeted patients understand their treatment options and reach out to loved
ones as potential donors, organ donation will become more accepted by the community and
spread throughout the networks of patients.
The other aspect of this intervention will focus on the environmental factors involved.
Targeted determinants include indifference of staff at dialysis and provider beliefs about
suitability of black patients for transplant. Change objectives are for dialysis staff to provide
education to targeted patients, nephrologists to assess their transplant referral process, and
providers to be educated about racial disparities. This side of the intervention combines with the
first to ensure patient awareness of transplant options. While increasing patient self-advocacy
begins the process to end disparate treatment, without the involvement of providers patients may
continue to be screened out or not referred. Providers of low income black ESRD patients can
create an impenetrable barrier if not involved in the process.
Strategies for the environmental causes include training staff at dialysis centers in
providing patient education, material provided to nephrologists to assist them in assessing current
referral processes, and training for providers to make them aware of disparities in renal
transplantation. The persuasive communication model can be used for these strategies in order to
convince providers of the necessity of their involvement in the transplant process. As stated
earlier, renal transplant can lead to reduced health care costs, improved quality of life and
longevity for patients. All of which should be the goals of medical providers.
In sum, the intervention to be created will target on African American patients with ESRD
and low socioeconomic status and improve access to renal transplantation. By focusing on
increased health literacy and education for patients, we can ensure that patients are capable of
advocating for their preferred treatments. Combined with strategies to involve providers, we can
begin to erase some of the difference between patients in diverse demographic groups.