We need to make policy changes to improve transplant rate
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A study by Schold and colleagues in the Journal the American Society of Nephrology demonstrated no significant improvement in rates of waitlisting or access to transplantation for vulnerable populations for 2 decades.
The stark differences in access stratified by median household income further demonstrates that a patient’s ZIP code remains a robust predictor of health disparities across many axes of measure. The authors’ finding that the rates of wait-listing or access to transplantation declined after the implementation of the kidney allocation system in 2014, is especially disappointing.
The temptation, in the face of this bleak picture of a longstanding failure of public policy, is to insist that the old solutions have not been tried, leading to advocacy for standardized, mandatory patient education about the option and benefits of kidney transplantation, an “opt-out” system for transplant referral (Huml and colleagues) or a new evangel of the benefits of living donor kidney transplantation would give some distance in bridging the gap for our most vulnerable patients.
Additional scrutiny on organ discard behaviors (Mohan and colleagues) on the part of transplant centers remains a tempting policy target.
Value of wait-listing as a metric
Though access to the waitlist and receiving a transplant are often conflated as an outcomes measure, the purported benefits of being placed on a waitlist when one’s median time to transplant is many years away are not obvious.
The downstream effects and unintended consequences of policy and payment models which prioritize access to the waitlist gives hostage to fortune: A substantial increase in referrals will exacerbate the workflow burdens and logistical challenges of post-waitlist management and patient tracking, including expending more time and resource expenditures on iterative patient evaluations and “expiration date” lab and radiology testing.
Payment models that incentivize wait-listing (like the End-Stage Rental Disease Treatment Choices model) without concomitant resources dedicated to post-waitlist tracking and management will pressure transplant centers to liberalize thresholds listing patients and will reduce the fraction of patients removed from the wait-list for an actual transplant rather than for reasons of deterioration or death.
‘Transplant rate’
Transplant centers are required to publicly report a “transplant rate,” defined as the number of patients transplanted divided by the number of patient waitlist years. A lower “transplant rate,” so defined, is sometimes used by patients to choose one transplant center over others. This transplant rate is sometimes considered by commercial payers in negotiating more or less favorable global case rates with transplant centers.
Transplant centers are also required to publicly report the fraction of patients removed from the waitlist for reasons other than transplant, including clinical deterioration and/or death. Considered alongside low margins, understaffing, the difficulties of post-waitlist surveillance and care coordination, and a new kidney allocation system that privileges long waiting times, transplant centers are mostly incented to maintain a smaller waitlist of patients with either living donor candidates who are highly sensitized or with many years of dialysis.
Challenges after transplant care
The limited number of transplant nephrologists available for providing longitudinal care was canvassed in a recent paper by Conception and colleagues that reflected on the tenuous state of the training pipeline in transplant nephrology in the United States. There, the authors suggested centers consider the repatriation of kidney transplant recipients back to local nephrology practices at the 6-month mark after transplant, a recommendation I think is better read as a cry for help. We must either find a way to expand access to transplant specialists or develop patient surveillance tools to improve the quality and granularity of remote monitoring of transplant recipients, while fundamentally reconceiving where the clinical responsibilities for long-term graft survival should lie.
Taking ‘access’ seriously
Until recently transplant centers were held by CMS to spectacular standards of 1-year patient- and graft-survival outcomes, leading to risk aversion in accepting organs and candidates for the waitlist. While implored to somehow overcome the daunting challenges of food insecurity, housing insecurity, financial instability and the other vicissitudes of the social determinants of health in service to improving access to transplantation to our most vulnerable fellow citizens, our regulators and policy makers offer no tangible assistance or even modest regulatory dispensation for transplant centers committed to the cause.
A successful transplant does not end with a completed anastomosis, so why do we resource transplant centers as though this were the case? Why are we surprised at the outcome when this is our public policy?
If the renal care community is serious about improving access to transplantation for the most vulnerable, public policy should be focused on providing the tangible resources to accomplish the task: bridging the digital divide, access to non-processed foodstuffs, to medications, to reliable transportation, to safe housing and to social services attuned to patients’ needs. If we cannot cultivate more transplant nephrologists and advanced practitioners, then we must develop more sophisticated and scalable means of remote patient monitoring and delivering care to patients ‘where they live,’ rather than where their doctors live.
Possible alternatives
One new idea is “smart” wait-listing, where staff would re-prioritize the evaluation and wait-listing of patients who are either preemptively referred or have an identified potential living donor candidate or are likely to receive an organ offer within 12 months to 18 months of completing their evaluation based on accumulated wait time. This approach has a number of benefits, including the following:
- a person’s status on the waiting list is “real,” in the sense of a low likelihood of removal for reasons other than transplant;
- resource-strapped transplant centers can focus on maintaining the candidacy of patients who are likely to be transplanted soon after listing;
- the currency of testing for listed patients will improve, and redundancy in testing will be reduced; and
- this approach will explicitly prioritize patients who come to transplantation with the most wait time with ESRD, a category disproportionately represented by vulnerable populations.
Naturally, this approach will deprioritize many patients who might benefit from transplantation. For patients not prioritized in a “smart” waitlist model, we need to develop a “bullpen” or “on deck” model, so they are not forgotten. These patients could be waitlisted “inactive,” but in that case the “transplant rate” metric applied to transplant centers needs reform.
A “smart” approach will need to be coupled with system-wide, standardized and robust education about the benefits of living donation, offered alongside the implementation of a living donor “champion” model or other similar interventions that expand on living donor education into action in identifying, soliciting and referring living donor candidates for evaluation.
“Smart” wait-listing will reduce the size of the waitlist. However, a smaller “smarter” waitlist is entirely compatible with a renewed focus on improving access to vulnerable populations and will allow for more direct focus on improving access to transplantation by way of concerted efforts identifying living donor candidates.
If policy makers want organ procurement organizations to improve performance in organ procurement rates, want transplant centers to be more aggressive in organ acceptance behaviors and want centers to be more expansive in ensuring access to those most fettered by the social determinants of health, achieving those outcomes will require additional targeted resources and reconsidering legacy quality metrics which are poor surrogates for access to actual transplants. No change comes without costs. If successful, expanded access and liberalized organ acceptance behaviors will likely come at some cost to patient and graft survival.
Our public policy should reflect that reality, and if reform can improve on 2 decades of policy failure, this is a tradeoff worth making.
- References:
- Conception B, et al. Adv Chron Kid Dis.2020;doi:10.1053/j.ackd.2020.05.005.
- Huml A, et al. Am J Transplant. 2021;doi:10.1111/ajt.16129.
- Mohan S. Kidney Int. 2018;doi:10.1016/j.kint.2018.02.016.
- Schold J, et al. J Am Soc Nephrol. 2021;doi:10.1681/ASN.2020060888.
- Schold J, et al. Am J Transplant.2016;doi:10.1111/ajt.13594 For more information
- Benjamin E. Hippen, MD, FASN, FAST, is clinical professor in the department of medicine at the University of North Carolina at Chapel Hill School of Medicine, North Carolina. He is also a member of Metrolina Nephrology Associates P.A., Charlotte, and a member of the Editorial Advisory Board for Nephrology News & Issues. He can be reached at bhippen@metrolinanephrology.com.
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