Kidney transplantation, whether using organs from deceased or living donors, has been well established as the optimal management for patients with end stage renal disease (ESRD). Unfortunately, it is not nearly as widely available as it should be.
On December 9, 2016, the Rogosin Institute, a full-spectrum kidney care and research organization offering both dialysis and transplantation in New York City, convened a transplant roundtable of 24 experts drawn from multiple sectors from medicine and surgery to media across the United States. Discussants included three individuals who have experienced the benefits of such transplants, one individual waiting for a transplant, and two living kidney donors. The assembled group was charged with determining new ways to overcome the obstacles to the improvement of the rate of kidney donation.
A passion to increase kidney donation clearly emerged from the discussion. Here we provide a brief overview of the facts and challenges to increasing kidney donation, and we present five potential solutions. More details for each proposed solution will be included in future issues of Kidney News.
Although 2016 was a good year for deceased-donor kidney transplants (over 13,000 for the first time), up 11% over 2015, the rate for living donation has not improved at all since it achieved its highest level over a decade ago. Here are some numbers to think about: Only 20% of the half million dialysis patients make it to the transplant wait list, and of those, 5000 die each year waiting. Chronic kidney disease (CKD) is growing, with more than an estimated 26 million Americans affected by it, and it occurs three times more often in the African American community. Dialysis costs Medicare $31 billion annually, and commercial insurers, another $9 billion. It is known that transplant patients live longer and better at a fraction of the cost of dialysis care, and yet the wait list for a kidney is growing each year. Optimally, dialysis should be considered as a bridge to transplant, with the emphasis on finding a living donor for as many ESRD patients as possible
Proposed solutions
How can we make a difference and increase the volume of transplants? Here are 5 ways that were emphasized at the roundtable:
Decreasing the need for a transplant through health promotion and disease prevention
Early education, detection, and intervention regarding obesity, hypertension, and diabetes, the major drivers of ESRD, are needed.
Increasing the supply of kidneys
Only 52% of American adults are registered for deceased organ donation. Some areas, such as New York state, are much lower at 24%. Concerted efforts to increase registration to 80% to 90% would certainly increase transplantation. Educational efforts regarding donor registration at the school level and community level would go far.
Decreasing the kidney discard rate
Twenty percent of kidneys procured are never used and are thrown out. Some of these organs may be salvageable. We need to consider what factors contribute to this discard rate. Are centers fearful of retribution if they take a chance on a marginal organ? Centers may currently be risk adverse to avoid increased oversight.
Increasing living donation
The option of living donation should be part of CKD education and not just at transplant centers. Transplant centers should have a dedicated donor team with experience and focus on live donors. A new slogan for patients to consider is, “Family and friends before fistula.” Education that transplantation may be a way to avoid dialysis is needed. The processes for donor screening and work-up should be quick and efficient, and policies should be in place to help decision-making for medically complex donors. Donor loss of wages and out-of-pocket expenses should be reimbursed. Because only 20% of the dialysis population is listed for transplant, a greater effort by dialysis units and nephrology clinics is needed to boost referrals. Although these efforts may not increase the number of deceased donors available, they have the potential to result in more live-donor opportunities.
Increasing kidney paired donation (KPD)
About 600 donations (10% of all living kidney donations) occur in swaps, a procedure that allows best-matched donors and recipients to be paired. This option needs to increase. More than half of all the kidney programs in the US had no KPD transplants in 2015, while the more experienced centers had 10% to 28% of their live donor volumes attributable to KPD. A major effort to encourage more centers to participate in the KPD process is needed. This includes making it easier for centers to be part of this process. Peer mentoring in the actual process would support such an increase.
It was the consensus of the participants in the roundtable that an urgent and concerted effort among all the stakeholders representing the various sectors involved is needed if a meaningful increase in the rate of transplantation is to be achieved. There is no excuse for not meeting this challenge. Hemodialysis units, nephrologists, transplant centers, the CKD community, and both CKD and ESRD patients and potential living donors and donor families need to come together to help overcome the barriers and build bridges in order to significantly reduce the enormous transplant wait list and the needless loss of life and suffering of individuals on this list. Finally, this roundtable was seen as a new call to action and only the first of an ongoing effort to increase kidney transplantation.
The Rogosin, an independent 501c3 organization, pioneered dialysis in New York in the late 1950s and kidney transplantation in 1963 with a living-related donor transplant program and has been a pioneer participant in the Center for Medicare and Medicaid Innovation’s integrative care model, the End-Stage Renal Disease Seamless Care Organization (ESCO). The institute has held roundtables and symposia on health literacy, quality measures in CKD and ESRD, mental health, nutrition, and the achievement of truly integrated care since 2015.
Roundtable participants included: L. Baxter, recipient/advocate; N.R. Benavides, MS, LiveOnNY; A.W. Bingaman, MD, PhD, Methodist Specialty and Transplant Hospital; Councilwoman J. Bonner (donor); M.B. Charlton, RN, SRN, CCTC, NYP-Weill Cornell Transplant Program; D. Clapper, APRN-BC, MSN, CCRN, CPTC, CTBS, DCI Donor Services; D. Dadhania, MD, MS, FAST, NYP-Weill Cornell Transplant Program; T. D’Antonio, recipient/advocate; T.H. Feeley, PhD, College of Arts and Sciences, University of Buffalo, State University of New York; K.J. Fowler, recipient/advocate; M.L. Ganikos, PhD, Division of Transplantation, Healthcare Systems Bureau, HRSA; P. Hoyt-Hudson, BSN, RN, Center for Health Action and Policy, The Rogosin Institute; S. Kapur, MD, FACS, Transplant Surgery, Weill Cornell Medicine; G.J. Kassar, Office of NY State Senator M. J. Golden; C. Lawson, RN, BSN Reach Kidney Care (TN); T. Loranger, Consultant, The Rogosin Institute; C. O’Leary, PhD, LMSW, Health Literacy Missouri; R.E. Patzer, PhD, MPH, Emory Transplant Center; G. Payne, MS, RN, CNN, Nephrology Clinical Solutions; M. Phillips, MPH, MSW, Center for Health Action and Policy, The Rogosin Institute; D.L. Rudow, DNP, Recanati/Miller Transplant Institute, The Mount Sinai Medical Center; M. Reiner, Renewal in Brooklyn; E. Scheele, ORGANIZE; D. Serur, MD, Kidney and Transplant Program, The Rogosin Institute and NYP-Weill Cornell Transplant Program; J. Sinacore, National Kidney Registry; B.H. Smith, MD, PhD, The Rogosin Institute; A. D. Waterman, PhD, Transplant Research and Education, David Geffen School of Medicine, UCLA.
