The Terrible Toll of the Kidney Shortage

Frank McCormick,1 Philip J. Held,2 and  Glenn M. Chertow2Author informationArticle notes Copyright and License information DisclaimerSee the article “Financial Costs Incurred by Living Kidney Donors: A Prospective Cohort Study” in  volume 29 on page 2847.

Widespread  agreement exists in the transplant community that the disincentives  facing kidney donors should be removed. The first step in this effort is  to identify what these disincentives are and estimate their magnitude.

Four years ago, Klarenbach et al.1 made a valuable contribution to this effort. Analyzing living donor  costs in Canada during the 2004–2008 period, they found that the average  “workforce productivity cost” was C$6729. This included both time off  from work for donation purposes for which the worker received no pay and  time off from work for which the worker received sick pay, vacation  pay, or employment insurance payments. The former is clearly a  disincentive to kidney donation. However, part of the latter is also a  disincentive, particularly the use of sick and vacation time/pay for  kidney donation, because these could have been used for other purposes.

Much  more importantly, the earlier study calculated the average “home  productivity cost” by multiplying average wage rates by the time that  donors were not able to perform household activities or care for  dependents.1 The result was C$5521, which is an order of magnitude greater than the usual method of estimating these costs, i.e.,  by counting only out-of-pocket spending. The latter method seriously  under estimates the disincentive facing donors/caregivers, because  typically, (1) much of the burden of this care is assumed by nonremunerated caregivers, such as family members or friends; (2) the dependents may receive a decreased amount of care; and (3) the donor himself or herself may require care.

The  sum of home and workforce average productivity costs in the 2014 study  was C$12,250 in 2008 Canadian dollars. This is equivalent to US$12,735  in terms of the prices and standard of living of the United States in  2017, an amount much higher than what had previously been assumed for  these costs.

In this issue of the Journal of the American Society of Nephrology, Klarenbach et al.2 have expanded and updated the earlier analysis using a much larger  sample of living kidney donors (821 versus 100) during the 2009–2014  period. The current study broadly confirms the results of the earlier  study, calculating that the sum of the two average productivity costs  was C$11,849 in 2016 Canadian dollars, which is equivalent to US$10,816  in 2017.

There is widespread agreement in the transplant community  that these two disincentives as well as the other disincentives facing  living kidney donors should be removed. This is true for two reasons: (1) simple fairness to donors and (2) it would increase the supply of donated kidneys and thus reduce the number of patients prematurely dying from ESRD.

With  regard to the second reason, the death toll from ESRD is very high in  large part because of the severe shortage of transplant kidneys. Roughly  speaking (all variables may not occur in exactly the same year), the  incidence of treated ESRD is currently, about 126,000 patients per year,  but only about 31,000 (25%) are added to the waiting list for a kidney  from a deceased donor (Table 1).  Moreover, only 20,000 (16%) actually receive a transplant kidney, of  which 14,000 (11%) are from deceased donors and 6000 (5%) are from  living donors. The approximately 106,000 (84%) who do not receive a  transplant are fated to live an average of 5 years on dialysis therapy  before dying prematurely.

Outcomes for US patients with ESRD (per year)

PercentDiagnosed with ESRD126,000100Added to waiting list31,00025Received a transplant20,00016 From a deceased donor14,00011 From a living donor60005Receive dialysis therapy until premature death106,00084Open in a separate window

Data reflect yearly rates in the United States from ref. 3.

The  16% of patients with ESRD who receive a transplant kidney are the  fortunate ones, because it enables them to live much longer and  healthier lives. In economic terms, the value of a transplant to a  patient on the waiting list is about $937,000.4 Moreover, under the current system in which compensation of kidney  donors is prohibited, each transplant saves taxpayers about $146,000,  because the total lifetime cost for treating a transplant patient is far  less than the lifetime cost for a patient receiving dialysis therapy,  and the government accounts for most of the spending on both. Thus, the  government could afford to compensate a kidney donor up to $146,000 and  still save money for taxpayers.

Most of the focus of concern in  the transplant community has been on the 25% of patients with ESRD who  are added to the kidney waiting list, particularly how many receive a  transplant, die, or are removed from the list because they become too  sick to transplant. Little attention has been paid to the 75% who are  not added to the list. But it is common knowledge that many of these  patients with ESRD would medically benefit from a transplant, and – if  there was no kidney shortage – would be recommended for the waiting  list, would be accepted by a transplant center, and would receive a  transplant.

What percentage of patients with ESRD fall into this  category? No one knows for certain. However, to see the full extent of  the harm done by the kidney shortage and the potential benefit from  ending it, let us assume that 50% of those who are diagnosed with ESRD  could medically benefit from a transplant. (This assumption is  consistent with the findings of Schold et al.5 that, if all of the patients on dialysis who have a life expectancy of  >5 years were placed on the kidney waiting list, the number on the  list would almost double.) Thus, half of the 126,000 patients who are  currently diagnosed with ESRD each year—63,000 patients—might medically  benefit from a transplant. However, if only 20,000 patients per year  receive a transplant, the remaining 43,000 would join the growing toll  of those who die prematurely because of the kidney shortage. To put this  in perspective, this is the same death toll as from 85 fully loaded  747s crashing each year.

We can extend this grim logic from the current time back over the past 30 years for which we have data, as shown in Figure 1.  The upper curve represents 50% of those diagnosed with ESRD each year,  the lower curve indicates the annual number of transplants, and the  vertical bars between the curves show the number of premature deaths  each year. Summing over all the bars gives the cumulative premature  death toll, which from 1988 to 2017 was a horrendous 982,000 (Figure 1).  Additionally, if we extrapolate the trend in ESRD diagnoses and  transplants over the past 10 years forward to the next 10 years, the  death toll would increase by an additional 465,000.

Figure 1.

Estimates  of the number of premature deaths due to the kidney shortage. The data  suggesting that 50% of new patients with ESRD could benefit from a renal  transplant allow an estimate of the number of premature deaths due to  the kidney shortage. Numbers for incidence of ESRD and transplantation  rates are from ref. 3.

Whatever  the exact percentage of patients with ESRD who would medically benefit  from a transplant, it is clear that the premature death toll from the  kidney shortage is much larger than just those who die on the kidney  transplant waiting list or are removed from it because they become too  sick to transplant. It is also certainly large enough to motivate  everyone in the transplant community to begin to reduce the kidney  shortage by taking the first step—to which no one seems to  object—removing the disincentives to kidney donation. That, in turn,  would create the momentum to consider taking the next, somewhat  controversial step to end the shortage, which is providing positive  incentives to kidney donors.

We are aware that great  progress is being made in producing synthetic organs through stem cell  generation and three-dimensional printing. However, until the happy day  arrives when such organs are readily available, we should address here  and now the terrible premature death toll caused by the kidney shortage  with a technology that is already available and proven—compensating  donors for their kidneys. Any arguments against this approach  (commodification, exploitation, etc.) must be weighed against this  terrible death toll.

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Published online ahead of print. Publication date available at www.jasn.org.

See related article, “Financial Costs Incurred by Living Kidney Donors: A Prospective Cohort Study,” on pages 2847–2857.

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1. Klarenbach  S, Gill JS, Knoll G, Caulfield T, Boudville N, Prasad GV, et al.: Donor  Nephrectomy Outcomes Research (DONOR) Network: Economic consequences incurred by living kidney donors: A Canadian multi-center prospective study. Am J Transplant 14: 916–922, 2014 [PMC free article] [PubMed] [Google Scholar]2. Klarenbach S, Przech S, Garg AX, Arnold JB, Barnieh L, et al.: Donor  Nephrectomy Outcomes Research (DONOR) Network: Financial costs incurred  by living kidney donors: A prospective cohort study. J Am Soc Nephrol 29: 2847–2857, 2018 [PMC free article] [PubMed] [Google Scholar]3. U.S. Renal Data System (USRDS)  2017.  Annual Data Report: Atlas of Chronic  Kidney Disease and End-Stage Renal Disease in the United States,  National Institutes of Health, National Institute of Diabetes and  Digestive and Kidney Diseases, Bethesda, MD  [Google Scholar]4. Held PJ, McCormick F, Ojo A, Roberts JP: A cost-benefit analysis of government compensation of kidney donors. Am J Transplant 16: 877–885, 2016 [PMC free article] [PubMed] [Google Scholar]5. Schold JD, Srinivas TR, Kayler LK, Meier-Kriesche HU: The overlapping risk profile between dialysis patients listed and not listed for renal transplantation. Am J Transplant 8: 58–68, 2008 [PubMed