Culture and the conditions in which one is born, grows, lives, works, and ages affect many areas of life, including health and health care. In this issue of CJASN, the article “Social Determinates of Health and Race Disparities in Kidney Transplant” (1) encourages transplant centers to identify and intervene on social determinates for at-risk populations, and it effectively concludes that more social support, education, and awareness about transplantation in these communities is needed.
I am a recipient of a kidney transplant, and I am also a Black American woman who was suddenly diagnosed with ESKD 7 years ago, at the age of 49. I grew up and currently live in the suburbs of Chicago, Illinois. I have a degree in sociology and, at the time of my sudden illness, I had a thriving career as a health care administrator with access to health care and a supportive family, yet I found myself on dialysis, needing a kidney transplant.
“You need a kidney transplant, but you may never be healthy enough to receive one.” This was my introduction to transplantation, spoken to me by my primary care physician at my bedside in the hospital. Those are words that I will never forget. I was also informed that the wait time in Illinois for a deceased-donor transplant was 5–7 years, and that most people do not survive 5 years on dialysis. Those statistics were both startling and upsetting. While others might have been deterred, I was motivated to educate myself about transplantation and organ donation. My intense desire to not remain on dialysis and not die on dialysis were major motivating factors for me to both research transplant centers and kidney transplant organizations and get involved with those organizations to empower not only myself but others as well. After 3 years on hemodialysis, I received a directed deceased-donor transplant. Unfortunately, not everyone is so lucky. In fact, many people that I met in the dialysis center are still there, 7 years later, and many others have died.
The statistics collected during the study by Wesselman et al. (1) shed some light on this perplexing and dangerous dilemma, while also raising some questions. If Black people are four times more likely than White people to have kidney disease, why did they represent only 25% of the people in this study? Although Black patients constituted 25% of the total study participants, 25% of these participants died, 35% were censored, and only 18% were transplanted. The answer as to why there were so few transplants seems to point to the stark contrast in living donors. Of those participants who received living-donor transplants, Black patients made up <10%. In addition to more education about living donation, there needs to be some systematic changes in the process of living donation. There are too many opportunities for living donors to be eliminated or deterred. For example, I knew a prospective living donor who submitted his pre-evaluation questionnaire, which included his self-reported height and weight. The response that he received by phone was, “lose some weight and call us back.” They did not see him, check his blood type, or give him an amount of weight to lose. This experience left him feeling very discouraged and, ultimately, he did not follow through to become a donor.
There are several social determinants that need to be supported to increase outcomes in transplantation, particularly in at-risk populations, including finances, transportation, psychosocial issues, and family support. In addition, given that uncontrolled high BP and diabetes are the leading causes of CKD, the lifestyles and environments that lead to kidney failure often prevent people from remaining on the transplant list, or, once transplanted, they cannot maintain the required lifestyle. I believe that transplant outcomes could be improved in at-risk populations if social determinants of health were addressed. So, how can we help patients stay ready for transplant?
The conclusion of the article speaks to some important steps that are required to address the social determinants of health and race disparities in kidney transplantation. Education, community-based workshops, and awareness campaigns will help to increase the number of Black people who receive living and deceased donations. Although the study focused on people who were in the transplant process, there are many people on dialysis who would be great transplant candidates if they had more education and support.
In my professional role today, I work with a team that provides education to kidney patients at all stages, recipients, caregivers, and the public through social media, educational programming, webinars, community partnerships, and a podcast. Together with other organizations, we can improve the outcomes of kidney patients across the country.
Disclosures M. Fox is the Director of Outreach and Government Relations for the National Kidney Foundation of Illinois.
Acknowledgments The opinions presented here are the author’s own and do not necessarily reflect a position or opinion of the National Kidney Foundation of Illinois. The content of this article reflects the personal experience and views of the author(s) and should not be considered medical advice or recommendation. The content does not reflect the views or opinions of the American Society of Nephrology (ASN) or CJASN. Responsibility for the information and views expressed herein lies entirely with the author(s).
Published online ahead of print. Publication date available at www.cjasn.org.
See related article, “Social Determinants of Health and Race Disparities in Kidney Transplant,” on pages xxx–xxx.
Copyright © 2021 by the American Society of Nephrology
↵ Wesselman H, Ford CG, Leyva Y, Li X, Chang C-CH, Dew MA, Kendall K, Croswell E, Pleis JR, Ng YH, Unruh ML, Shapiro R, Myakovsky L : Social determinants of health and race disparities in kidney transplant. Clin J Am Soc Nephrol 16: 262–274, 2021 Google Scholar
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