The FAIR Foundation Concept for Organ Donation Reform: An ... · (Figure 1B). There was an increase of 20% in deceased donor kidney transplants from 2004 to 2013 and a 14% decrease

The FAIR Foundation 1

The FAIR Foundation Concept for Organ Donation Reform:

An Evidence Based Healthcare Initiative to Save Lives

FAIR Foundation Policy Brief, February, 2017

www.fairfoundation.org



The Crisis...

The Result...On average, 22 people die each day while waiting for a transplant

Financial Incentives for Organ Donation

The majority of Americans support a cost effective, compassionate solution...

Less than 16,000 Average number of donations per year despite aggressive campaigns to increase organ donation

Over 118,000 Patients waiting for an organ transplant


What the American People think...

1

W I N N I N G K N O W L E D G E T M

● Financially Compensating Organ DonationFAIR Foundation | June 2, 2014

In 2014, the FAIR Foundation contracted with Penn Schoen & Berland to find out what American voters think of the idea. The data was studied and peer reviewed In Journal of the American Medical Association Surgery. A copy of the article follows.

There is a world-wide organ donor shortage despite efforts to stimulate deceased and living organ donations. In this country alone, someone dies every hour waiting for a transplant or becomes too sick to survive transplant surgery. The global organ shortage has created a disturbing third world black market in human organ trafficking.

In America, everyone in the transplant process is paid except the donor: the procurement organizations, the hospitals, doctors, nurses and all of the peripheral support people. Donors are expected to not only donate an organ, but also provide personal funds for related expenses, such as medical travel and lodging, child care, and lost wages. Some reports indicate that donors may have difficulty obtaining life and affordable health insurance after giving an organ. Since altruism has failed in obtaining suitable numbers of transplantable organs, many believe that a legal and compassionate system of compensating living organ donors should be considered.

Lifting the ban on donor compensation, as imposed by the 1984 NOTA law, is now a key mission of the FAIR Foundation. Our Board, which includes patients, transplant professionals, and community advocates, has been working on this issue diligently for several years. The FAIR Foundation sponsored a nationwide survey of voting Americans regarding donor compensation, and results were published online March 23, 2016, in JAMA Surgery and in its August printed edition. The

article reports sound data that shows a majority of American voters are in favor of financial compensation for live kidney donation.

There are over 120,000 (https://optn.transplant.hrsa.gov/) Americans on the transplant waiting list with another half million patients on dialysis therapy for end-stage renal disease. All could go back to a productive, higher quality of life if there were not a severe shortfall in organs for transplantation. In addition, billions of dollars could be saved each year in the medical care costs now paid largely by government programs such as Medicare and Medicaid in keeping these hundreds of thousands alive while hoping for the transplant that never comes.

We understand that donor compensation is an emotional topic for patients who wait for a transplant and their doctors who do not have the resources at hand to save their lives. It is also a rich topic for medical ethicists and those with public policy interests, some of whom find the idea of donor compensation morally and ethically problematic at best, and repugnant at worst. At the FAIR Foundation, we support real-time studies of donor compensation to determine if lives now lost and imperiled could be saved and restored by programmatic, regulated, fair compensation to donors who render the only resource now so sadly lacking—the organ needed to save another’s life.

—Thomas G. Peters, MD

Crisis: Shortage of Organs for Transplant — Long waiting list for organ transplant


Copyright 2016 American Medical Association. All rights reserved.

Views of US Voters on Compensating Living Kidney DonorsThomas G. Peters, MD; Jonathan S. Fisher, MD; Robert G. Gish, MD; Richard J. Howard, MD, PhD

IMPORTANCE Patients in the United States waiting for kidney transplantation die in increasingnumbers owing to the severe kidney shortage, whichmight be alleviated by compensatingliving kidney donors.

OBJECTIVE To determine the willingness of voting US citizens to become living kidney donorsand to ascertain the potential influence of compensation for donation.

DESIGN, SETTING, AND PARTICIPANTS A professionally designed quantitative surveywasadministered by an international polling firm in June 2014. Information was collected onwillingness to donate a kidney and the potential influence of compensation ($50000);survey data included respondent age, income, education level, sex, US region, race/ethnicity,marital status, political affiliation, likelihood to vote, and employment status. The survey wasperformed via a random-digit dialing process that selected respondents via both landlinesandmobile telephones to improve population representation. The survey included 1011registered US voters likely to vote.

MAIN OUTCOMES ANDMEASURES The degree to which the US voting public is willing todonate a kidney and the perceptions of current voters toward paying living kidney donors.

RESULTS Of the 1011 respondents, 427 weremale and 584were female, with 43% ofparticipants between ages 45 and 64 years. With respondents grouped by willingness todonate, we found that 689 (68%) would donate a kidney to anyone and 235 (23%) only tocertain persons; 87 (9%) would not donate. Most (59%) indicated that payment of $50000would make them evenmore likely to donate a kidney, 32%were unmoved by compensation,and 9%were negatively influenced by payment.

CONCLUSIONS AND RELEVANCE Most US voters view living kidney donation positively, andmost would bemotivated toward donor nephrectomy if offered a payment of $50000.Becausemost registered voters favor such payments, and because thousands of lives mightbe saved should compensation increase the number of transplantable kidneys, laws andregulations prohibiting donor compensation should bemodified to allow pilot studies offinancial incentives for living kidney donors. Outcomes of such trials could then result inevidence-based policies, which would incorporate fair and just compensation to thosepersons willing to undergo donor nephrectomy.

JAMA Surg. doi:10.1001/jamasurg.2016.0065Published online March 23, 2016.

Invited Commentary

Author Affiliations:University ofFlorida College of Medicine,Jacksonville (Peters); FAIRFoundation, Palm Desert, California(Peters, Gish); Scripps Center forOrgan Transplantation, La Jolla,California (Fisher); Liver TransplantProgram, Division ofGastroenterology and Hepatology,Department of Medicine, StanfordUniversity Medical Center, Stanford,California (Gish); LifeQuest OrganRecovery Services, Gainesville,Florida (Howard).

Corresponding Author: Thomas G.Peters, MD, Department of Surgery,University of Florida College ofMedicine, 653W 8th St, Jacksonville,FL 32209 ([email protected]).

Research

Original Investigation

(Reprinted) E1


Downloaded From: http://archsurg.jamanetwork.com/ on 03/23/2016



T housandsofpatientswithend-stage renaldisease in theUnitedStateshavehadpreventabledeathsowing to theshortageof transplantable kidneys. TheOrganProcure-

ment and Transplantation Network database confirms thatfrom2004 to 2013, 63 742personsdiedor became too sick fortransplantation while awaiting a kidney.1 During that time,166667kidneyswere transplanted, 105214 fromdeceasedand61453 from living donors.1 Thus, for every 1000 US patientswho received a kidney, 382 eligible persons died of circum-stances potentially correctable by kidney transplantation. In2013, there were 7604 such potentially preventable eventscompared with 5009 in 2004 (Figure 1A).

Currently, the US kidney transplantation waiting list ex-ceeds 101 400 patients.1 The list grows each year, while thenumber of kidneys transplanted stagnates or diminishes(Figure 1B). There was an increase of 20% in deceased donorkidney transplants from 2004 to 2013 and a 14% decrease inliving donor kidney transplants (Figure 1C). The graft sur-vival rate from living donors is almost double that of de-ceased donors.2 Although there are risks to living donation,negative incidences remain low.3,4 Novel strategies, such asliving donor kidney exchanges and other efforts promotinglivingkidneydonation,havenotmet theever-growingneed.5,6

Nearly all state-level policies have had a negligible effect ondonation.7 Increasing the number of living persons undergo-ing donor nephrectomy could expand the number of trans-plantable kidneys, but donation is dependent on altruismbecause it is illegal under the National Organ Transplant Actto pay any donor.8 Because altruism has failed, one way toincrease kidney transplantation may be to provide financialcompensation to living donors.

One type of donor compensation is to reimburse all costs,such as lost wages, travel expenses, and follow-up care. Suchpayments are legal and not contentious, but many donors donotqualify for assistance throughexistingprograms.9-11 Thus,donor financial hardship remains a significant barrier. An-other typeof compensation,which is controversial but poten-tially more effective, is the provision of financial incentivesbeyond expenses. These may take the form of an in-kind re-ward (eg, a contribution to thedonor’s retirement fund, an in-come taxcredit, or a tuitionvoucher) or evenadirect cashpay-ment. Persons favoring payment believe that living kidneydonations would increase and waitlist deaths would de-crease and that remuneration could be ethicalwith respect tothedonor.12,13 Those against financial incentives disagree andassert that even with a transparent and well-regulated com-pensation program, potential donors would be subject to co-ercion, undue influence, and body commodification.14 Addi-tionally, it has beenargued that paymentwouldgenerate suchanegativepublic response that livingdonation ratesmight ac-tually decrease.15,16

The issueof financial incentives inorgandonationhasbeendeliberated for more than 2 decades.15-17 Most relevant peer-reviewed reports and government policies are based on opin-ion, anecdotes, moral constructs, individual testimony, tra-dition, andpersonalbeliefs.Noevidence-baseddatageneratedfromclinical trialsofdonorpaymentareavailablebecausesuchtrialsare illegalunder theNationalOrganTransplantAct.There-

Figure 1. US Kidney TransplantWaiting List Trends, 2004 to 2013

18 000

14 000

10 000

6000

16 000

12 000

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02004 2005 2006 2007 2008 2009 2010 20132012

Patie

nts,

No.

Year2011

Kidney transplants vs waitlist removals per yearA

Total transplants

Total removed fordeath or too sick

120 000

100 000

60 000

80 000

40 000

20 000

02004 2005 2006 2007 2008 2009 2010 20132012

Patie

nts,

No.

Year

2011

Waitlisted patients vs kidney transplants per yearB

Waitlisted Total transplants

18 000

14 000

10 000

6000

16 000

12 000

8000

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2000

02004 2005 2006 2007 2008 2009 2010 20132012

Patie

nts,

No.

Year2011

Trends in types of kidney transplants per yearC

Total transplants

Living donor transplants

Deceased donor transplants

Key PointsQuestion Howmuch do US voters support living kidney donationand financial compensation for living kidney donors?

Findings Of 1011 randomly selected US voters, 68%would donatea kidney to anyone, 23%would donate only to certain persons,and 9%would not donate. Most (59%) indicated payment of$50000wouldmake them evenmore likely to donate.

Meaning Most US voters view living kidney donation positivelyand would bemotivated to become a living donor by a payment of$50000, which implies public support to modify currentrestrictive laws to permit studies of financial incentives for livingkidney donors.

Research Original Investigation Views of US Voters on Compensating Living Kidney Donors

E2 JAMA Surgery Published online March 23, 2016 (Reprinted) jamasurgery.com





fore, thematter of payment inorgandonation is anational po-litical issue that should be addressed by US voters and legis-lators todevelopevidence-basedpolicies.Acombinedworkinggroupconsistingofmembersof theAmericanSocietyofTrans-plantation and the American Society of Transplant Surgeonsrecently argued that it was important to engage the public indiscussions about increasing organ donation and that poli-cies concerning financial incentives and the removal of disin-centivesmay best be defined by the citizenry.18While debateover the ethics, nature, and scope of donor compensationmatures,12,19we sought tounderstand the current attitudes ofa statistically balanced sample representative of US votersregarding whether living kidney donors should receive cashpayments.

MethodsA quantitative, nationwide telephone survey of 1011 regis-teredUSvoters likely tovotewas completed in June2014. Thesurvey was engaged by the FAIR Foundation, a 501(c)(3) vol-unteer organization interested in US health resources alloca-tion, and designed and administered by Penn Schoen Ber-land,an internationalpolling firm.Because thispolitical surveywas commissioned by a private 501(c)(3) corporation, and be-cause thephonenumbers arepublically available andno iden-tifying information was obtained, institutional review boardapproval was not necessary.

A random-digit dialing process selected respondents viaboth landlines and mobile telephones to optimize unbiasedpopulation representation. From 16851 Americans willing tocomplete the survey, a final assemblage of 1011 persons wasselected to produce a study population representative of theUS voting public. Demographic information comprising age,income, education level, sex, US geographic region, race/ethnicity, marital status, political affiliation, likelihood tovote, and employment status was collected. Survey respon-dentswere self-described asUS citizens registered tovote andlikely to continue voting. All survey questions and responsechoices are available at https://fileshare.ps-b.com/dl/3yF2PPoHc8.

Answers to specific questions were graded on a 4-pointscale (eg, “Do you strongly agree, somewhat agree, some-what disagree, or strongly disagree with the following state-ment: I would be open to being a living kidney donor to any-one.”). Respondent choiceswere compiled so that answers ofstrongly agree and somewhat agree were reported in a singlecategory: agree.Answersof somewhatdisagreeor stronglydis-agree were similarly aggregated. Some queries included anopinion statement andaquestion abouthowagreeable or dis-agreeable therespondentwastothatstatement;answerchoicesfor these questions were graded on the same 4-point agree-able to disagreeable scale with an additional “don’t know”option.

The surveybeganbygatheringdemographicdetails.Next,with no mention yet about paying donors, respondentswere asked how open they were to being a living kidneydonor. As part of the analysis, respondents were sorted into

3 baseline groups corresponding to their willingness todonate without regard to donor incentives. Group 1 (any-one) included those positive to donating to anyone, includ-ing unknown persons; group 2 (family/friends) includedthose positive to donating with restrictions, eg, only to fam-ily or friends; and group 3 (no one) included those whowould not donate to anyone.

All 1011 respondents were assigned to 1 of these groups.Next, to determine the effect of paying living kidney donors,all 1011 respondents were asked how a tax-free payment of$50000 from the health care system would affect their will-ingness to donate a kidney to anyone, to family/friends, or tono one. This level of compensationwas chosen because it is asubstantial amount and is less than the annual Medicare in-center hemodialysis per-patient cost.20 To assess how votersmight regardpayment forotherhumanbiologicassets, the sur-vey explored perceptions of payment formarrow, blood, ova,and sperm in relation to living kidney donation.

During the survey, it became apparent that, regardless ofwillingness to donate, some respondents perceived paymentto themselves as different from the concept of paying livingdonors as a societal norm. To ascertain opinions about thesocial justification for paying donors, 635 of the 1011 respon-dentswere additionally queried about supporting or not sup-porting compensation inprinciple. This cohort of 635was fur-theranalyzedwithrespect toageandincomelevel todeterminehow these factors might clarify who would favor or disfavorpaying living kidney donors.

Statistical analysisusedcontingency tablesbuilt fromsur-vey questions, demographic information, and changes to re-spondent likelihood todonateunderdifferent conditions. Sta-tistical significance was calculated (95% CI) for groups ofrespondents in related subgroups. Incomplete ormissing an-swers prompted withdrawal from analysis only for that par-ticularquestion; complete answers fromthat respondentwereretained.Significance testingdetails acrossall groupsareavail-able at http://pic.dhe.ibm.com/infocenter/spssdc/v6r0m1/index.jsp?topic=%2Fcom.spss.ddl%2Ftom_statisticalformulae_colprops.htm.

ResultsBaselineWillingness to DonateWithout Regardto CompensationOf the 1011 respondents, 689 (68%) indicated that they wereopen to donating a kidney to anyone (group 1); 235 (23%) saidthat they were open to donating with restrictions (family/friends; group 2); and 87 (9%) stated that they would not do-nate a kidney to anyone (group 3) (Table 1; Figure 2A). For all1011 respondents, considering sex, age, and employment sta-tus, there was little variance about respondents’ self-designation regarding their owndonor status. A range of 60%to 76% of respondents considered themselves donors toanyone, while 21% to 29% indicated that they would donateto family or friends. These replies confirm that voting Ameri-cansview livingkidneydonationpositively, at least across sex,age, and employment groupings.

Views of US Voters on Compensating Living Kidney Donors Original Investigation Research

jamasurgery.com (Reprinted) JAMA Surgery Published online March 23, 2016 E3





Payment for Living Donor Nephrectomy:Personal Decision EffectsAll 1011 participantswere evaluated todeterminewhetherdo-nor compensation would move them toward a positive or anegative decision to donate a kidney (Table 2; Figure 2B). Forthe 689 group 1 respondents, 428 (62%) indicated that pay-ment of $50000 would make them even more likely to do-nate. For the 235 group 2 respondents, 141 (60%) were morelikely to consider undergoing nephrectomy. For the 87 group3 respondents, 23 (26%) were more willing to donate if com-pensated. Conversely, movement away from donating whenoffered $50000occurred in 54 (8%), 22 (9%), and 16 (18%) re-spondents ingroups 1, 2, and3, respectively (allP < .05).A totalof 323 respondents (32%) did not move toward or away fromtheir original self-designation.Thus,paymentmotivatedmoreUSvoters topositivelyconsiderdonornephrectomyrather thanto reject the notion of donating a kidney.

US Citizens’ Support for Living Donor CompensationFor the635USvoters askedabout societal normsofpaying liv-ingdonors, 432 (68%)were ingroup 1, 149 (23%)were ingroup2, and 54 (9%) were in group 3, reflecting the exact propor-tions of the entire 1011 respondents (Table 3). Of this cohort,387 (61%)wereopentosupportingdonorpayments.Whenana-lyzedcomparedwithbaselinewillingness todonate,285of432persons (66%) ingroup 1 favoredcompensatingdonors, a two-thirdsmajority of already-willing donors. This degree of sup-port was significantly greater (P < .05) than the 79 of 149ma-jority (53%) ingroup2andthe23of54 (43%) ingroup3favoringa societal policy of living donor compensation.

Results by respondent age revealed that 53 of 68 voters(78%) aged 18 to 29 years favored payment, a significantlyhigher percentage than all other age groups (P < .05). How-ever, 68 of 108 respondents (63%) aged 30 to 44 years, aswellas 266 of 459 respondents (58%) 45 years and older, favored

paying living kidney donors. Thus, a majority (58% to 78%)acrossall agesofUSvoters favored theconcept inprinciple thatpersons undergoing donor nephrectomy should be paid.

Datawere available for 521 of 635 respondents (82%)will-ing to disclose their annual household income while statingtheiropinionsaboutpaying livingdonors.Of thosewhoearnedless than$50000, 175 of 257 (68%) favored compensatingdo-nors, a proportion significantly higher than other incomelevels (P < .05). Of those earning between $50 000 and$100000, 111 of 191 (58%) favored compensation, while 41 of73 (56%) earningmore than $100000 favoredpayment. At noincome levelwas amajority against compensation, and for allincome levels, 327 of 521 respondents (63%) favored payingliving kidney donors.

Figure 2.Willingness to Donate a Kidney

100

80

60

40

20

90

70

50

30

10

0

100

80

60

40

20

90

70

50

30

10

0

Resp

onde

nts,

%

To Anyone(n = 689)

To No One(n = 87)

To Family/Friend(n = 235)

Baseline willingness to donate a kidneyA

Resp

onde

nts,

%

To Anyone(n = 689)

To No One(n = 87)

To Family/Friend(n = 235)

Effect of payment of $50 000 on willingness to donateB

More willing

Less willing

Unchanged

Table 2. Effect of Compensation for Living Donor NephrectomyonWillingness to Donate

Baseline Willingness Total No.

No. (%)MoreWilling Less Willing No Change

Donate to anyone 689 428 (62) 54 (8) 207 (30)

Donate tofamily/friends

235 141 (60) 22 (9) 72 (31)

Would not donate 87 23 (26) 16 (18) 48 (55)

Total 1011 592 (59) 92 (9) 327 (32)

Table 1. BaselineWillingness toDonateWithoutRegard toCompensation

Characteristic

No. (%)

Total

Would Do-nate to Any-one

Would Do-nate toFamily/Friends

Would NotDonate

All 1011 (100) 689 (68) 235 (23) 87 (9)

Sex

Male 427 (42) 293 (69) 106 (25) 28 (7)

Female 584 (58) 396 (68) 129 (22) 59 (10)

Age, y

18-29 121 (12) 92 (76) 25 (21) 4 (3)

30-44 169 (17) 113 (67) 46 (27) 10 (6)

45-64 437 (43) 302 (69) 103 (24) 32 (7)

≥65 284 (28) 182 (64) 61 (21) 41 (14)

Employmentstatus

Employed 496 (49) 357 (72) 113 (23) 26 (5)

Student 42 (4) 26 (62) 12 (29) 4 (10)

Unemployed 65 (6) 39 (60) 19 (29) 7 (11)

Retired 322 (32) 206 (64) 73 (23) 43 (13)

Other 70 (7) 50 (71) 14 (20) 6 (9)







Compensation for Kidneys vs Other Living Donor TissuesRegarding compensation for human kidneys,marrow, blood,ova, and sperm, more US voters favored payment for kidneyandmarrowdonors thancompensationforblood,ova,orspermdonors.Amongall 1011 respondents, 56%and58%agreed thatcompensation should be allowed for kidney and marrow, re-spectively. When asked about payment for blood, ova, andsperm,approvalwas significantly lowerat48%,41%,and35%,respectively (all P < .05).

DiscussionEvery year, increasing numbers of US patients awaiting kid-ney transplantation die or become so ill that they are no lon-ger considered transplantation candidates. Themajor reasonfor this failure of patient care is the shortage of kidneys fortransplantation.An increase in livingkidneydonorscouldsolvethis problem, yet financial burdens often remain a barrier toliving kidney donation.21 The idea that living donors shouldnotbe financiallyencumberedhasbeenaffirmedbytheAmeri-can Society of Transplantation and the American Society ofTransplant Surgeons, professional societies that are nowcon-sidering how donor remuneration might relieve the kidneyshortage in America.13,18,22

Whilemany transplantationprofessionals still opposedi-rect payments in organ donation, others affirm that financialincentives should be debated in public. The attitudes of pro-fessionals opposing payment may lag behind those of theAmerican populace, which often accepts policy changes be-forepoliticians, regulators, and judgesaddressandmodify lawsand regulations. This “population-out-in-front” phenom-enon has been evident in issues such as same-sex marriage,marijuana use, and end-of-life imperatives. A poignant ex-ample of the out-in-front phenomenon is that in 1947, fewerthan 40% of Americans were likely to support physician-assistedeuthanasia,whileacceptance isashighas70%today.23

Publicandprofessionalattitudesaboutpayingdonorshavevaried over time. Hoeyer et al24 reviewed 23 articles pub-lished from 2002 to 2012 regarding public opinion of finan-cial incentives in both living and deceased donation. Theyfound broad differences for and against financial incentives,with a low overall acceptance for paying living donors. How-ever, they noted a considerable preference for nonmonetaryrewards, including paid lifetime donor health care, preferen-tial treatment should a livingdonorneed transplantation, anddeferment of any donation costs. In 2012, Canadian citizens,health care professionals, and those affected by kidney dis-ease were surveyed about financial incentives to increaseliving kidney donation.25 Although only 14% of professionalsand 27% of kidney patients supported paying donors, nearlyhalf (45%) of the general public favored compensation. Thestudy concluded that theCanadianpublic sawpayment as ac-ceptable and that further research shoulddeterminewhat rolefinancial incentivesmightplay. InaNetherlandsstudy,vanBu-ren et al26 surveyed 250 living kidney donors, arguably thepopulation with the most investment in the issue. Respon-dents were asked in retrospect—ie, after donation was com-pleted—whether they would have wanted a financial rewardand whether they favored a regulated system of payment tostimulate kidney donation.Whilemost (78%) did not desire areward for themselves, noting that they donated out of lovefor the recipient, 60% favored payment to anonymous do-nors and 46% favored a payment system for future living kid-ney donors.

Concerns for undue inducement and coercion throughfinancial incentives, particularly for payments beyond costsof the donor, remain19 despite the work of Halpern et al27 in2010 that showed that (1) although higher payments in-creased theprobabilitiesofdonating, theydid soevenlyacrossdifferent incomestrata and (2) poorer personsweremorewill-ing to donate independent of payment. Moreover, in agree-ment with our results, payment did not appear to adverselyaffect altruistic motivations to donate. Gordon et al28 re-

Table 3. Level of Agreement in PrincipleWith Compensating Living Kidney Donors

Respondents Total No.

No. (%)

Agree Disagree Don’t KnowAll 635 387 221 27

Willingness to donate

Donate to anyone 432 285 (66)a,b 131 (30) 16 (4)

Donate to family/friends 149 79 (53) 61 (41)a,b 9 (6)

Would not donate 54 23 (43) 29 (54)a,b 2 (3)

Age, y

18-29 68 53 (78)a,c 15 (22) 0 (0)

30-44 108 68 (63) 39 (36) 1 (1)

45-64 262 152 (58) 99 (38)a,c 11 (4)

≥65 197 114 (58) 68 (35) 15 (7)

Annual income level, $ 521

<50 000 257 175 (68)a,d 75 (29) 7 (3)

50 000 to 100 000 191 111 (58) 73 (38)a,d 7 (4)

>100 000 73 41 (56) 31 (43)a,d 1 (1)

a Statistically significant at P < .05.bRespondents willing to donate toanyone favor compensationmorethan restricted donors andnondonors, and restricted donorsand nondonors disagree with livingdonor compensationmore thanrespondents willing to donate toanyone.

c Respondents aged 18 to 29 yearsfavor donor compensation inprinciple more than those of otherages; those aged 45 to 64 yearsdisfavor compensationmore thanrespondents of other ages.

dRespondents with incomes lessthan $50000 favor donorcompensationmore than those ofhigher income levels, who disfavorcompensationmore than the groupwith less than $50000.







ported that direct payment of money was themost preferredform of compensation in 61% of respondents and that com-pensation would increase the likelihood to donate in 29% ofrespondents but would not change the view of 70% of per-sons queried. Offering $5000 or $10000 to give a kidney tofamily and friends or strangers, respectively,were amounts atwhich participants began to consider donation more posi-tively. These authors further found that undue inducementpayment levels for nephrectomywere $50000and $100000for family and friends and strangers, respectively, thus con-cluding that loweramountsofpaymentmaymotivate thepub-lic in an acceptable fashion. In contrast, we have found thatmost US voters who would be willing to consider donor ne-phrectomywouldbemorewilling todo sowhenoffereda cashpayment of $50000, and even some initially not in favor ofdonation indicated that they would be swayed. Our findingsrefute the assertion that the US public, and particularly theAmerican voter, holds payment for living kidney donation indisdain. Instead, our data suggest that a substantial propor-tion of US voters would consider living donation, would bemore inclined todonate if paid a sufficient amount, andwouldfavor compensating donors as a societal norm.

An overriding and virtually ubiquitous tenet of modernmedicine is thatdecisions related tocaremustbebasedonevi-dence.Theevidence regarding thecircumstances in theUnitedStates related to sufficient organs for transplantation is clear:the current system to obtain organs, particularly kidneys, fortransplantation is inadequate. Surveydata suggest thatmanycitizens would consider donating a kidney if there were nofinancial burden and adequate compensation. However, ac-tual behaviorsmay not fully comport with survey responses.

Therefore, the way to determine whether compensatingliving kidney donors would substantially increase the num-ber of kidneys for transplantation and where exactly the lineis between fairness and undue inducement or coercion is todesign and carry out clinical trials, throughwhich data couldbe obtained on the actual behaviors of potential donors andon the attitudes and opinions of actual donors who receivecompensation.

ConclusionsMost US voters support living kidney donation, both in termsof donation and compensation. Persons self-described as po-tential donors appear evenmore inclined to donate if offeredpayment. Thus, the inclination toward donation appearsstrengthened,notweakened,bypayment.MoreAmericansbe-lieve that livingkidneyandmarrowdonors,whocurrentlymaynot be paid by law, aremore deserving of compensation thandonors of ova, sperm, and blood, who currently can be paid.Because too many US patients are dying owing to the inad-equate kidney supply, and because paying living kidneydonorscould increase thenumberofkidneys,weconclude thatthis optionmust be seriously considered. Amending existingfederal law so that pilot studies concerning donor compensa-tioncango forward is a reasonable start, andour findings showthat it shouldbepolitically feasible.Resultsofsuchclinical trialsshould be the basis of regulatory policy. If pilot studies sup-port paying livingkidneydonors, perhapsoneday theremightbe a longwaiting list of personswanting todonate rather thana list of Americans waiting for kidneys that never come.

ARTICLE INFORMATION

Accepted for Publication:December 28, 2015.

Published Online:March 23, 2016.doi:10.1001/jamasurg.2016.0065.

Author Contributions:Dr Peters had full access toall of the data in the study and takes responsibilityfor the integrity of the data and the accuracy of thedata analysis.Study concept and design: Peters, Gish, Howard.Acquisition, analysis, or interpretation of data:Peters, Fisher, Gish.Drafting of the manuscript: All authors.Critical revision of the manuscript for importantintellectual content: All authors.Statistical analysis: Peters, Gish.Obtained funding: Peters.Administrative, technical, or material support:Peters, Gish, Howard.Study supervision: Peters.

Conflict of Interest Disclosures: Funding wasobtained from the FAIR Foundation, where DrPeters serves as president and served as a directorfor more than a decade. The FAIR (Fair Allocationsin Research) Foundation promotes access to organtransplants and the equitable distribution ofbiomedical research funds for all diseases. Heworked closely with Penn Schoen Borland (PSB)staff on statistical content analysis andadministrative, technical, andmaterial matters. DrGish serves as vice president of the FAIRFoundation. No other disclosures were reported.

Funding/Support: All financial andmaterialsupport for this work came from funds from theFAIR Foundation paid directly to PSB to undertakethe survey on compensating living kidney donors.

Role of the Funder/Sponsor:While Drs Peters andGish are current officers of the FAIR Foundation, itsdirectors and staff had no role in the design andconduct of the study; collection, management,analysis, and interpretation of the data; orpreparation, review, or approval of themanuscript.The decision to submit themanuscript forpublication was that of the authors.

Additional Contributions:Messrs Merrill Raman,BA (PSB), and JordanMaitland, BA (PSB), wereinvolved with the technical aspects of surveydesign, direction, analysis, data interpretation, andreporting. Each worked principally with Drs Petersand Fisher to assure that results reporting wasaccurate and fully understandable to readers.Messrs Raman andMaitland are employed by PSB,and neither reported conflicts of interest in mattersof organ donation and transplantation. Ms CathyTeal, BFA, is employed as executive director of theFAIR Foundation. She was fully aware of thefinancial and contract matters between FAIR andPSB. Financial support for the PSBwork wasentirely from FAIR Foundation funds; the 4 authorswere not compensated for their work on thissubmission. Ms Teal was made fully aware of thedetails and progress of themanuscript.

REFERENCES

1. US Dept of Health and Human Services. OrganProcurement and Transplantation Network. http://optn.transplant.hrsa.gov/converge/latestData/viewDataReports.asp. Accessed September 24,2015.

2. Matas AJ, Smith JM, Skeans MA, et al.OPTN/SRTR 2012 annual data report: kidney. Am JTransplant. 2014;14(suppl 1):11-44.

3. Segev DL, Muzaale AD, Caffo BS, et al.Perioperative mortality and long-term survivalfollowing live kidney donation. JAMA. 2010;303(10):959-966.

4. LamNN, Lentine KL, Levey AS, Kasiske BL, GargAX. Long-termmedical risks to the living kidneydonor. Nat Rev Nephrol. 2015;11(7):411-419.

5. Gentry SE, Montgomery RA, Segev DL. Kidneypaired donation: fundamentals, limitations, andexpansions. Am J Kidney Dis. 2011;57(1):144-151.

6. Jendrisak MD, Hong B, Shenoy S, et al. Altruisticliving donors: evaluation for nondirected kidney orliver donation. Am J Transplant. 2006;6(1):115-120.

7. Chatterjee P, Venkataramani AS, Vijayan A,Wellen JR, Martin EG. The effect of state policies onorgan donation and transplantation in the UnitedStates. JAMA Intern Med. 2015;175(8):1323-1329.

8. National Organ Transplantation Act, 42 USC§273-274 (1984).







9. Klarenbach S, Gill JS, Knoll G, et al; DonorNephrectomy Outcomes Research (DONOR)Network. Economic consequences incurred byliving kidney donors: a Canadianmulti-centerprospective study. Am J Transplant. 2014;14(4):916-922.

10. Warren PH, Gifford KA, Hong BA, Merion RM,Ojo AO. Development of the National Living DonorAssistance Center: reducing financial disincentivesto living organ donation. Prog Transplant. 2014;24(1):76-81.

11. Patient assistance program. American TransplantFoundation. http://www.americantransplantfoundation.org/programs/pap/.AccessedMay 6, 2015.

12. Fisher JS, Butt Z, Friedewald J, et al. BetweenScylla and Charybdis: charting an ethical course forresearch into financial incentives for living kidneydonation. Am J Transplant. 2015;15(5):1180-1186.

13. Matas AJ, Satel S, Munn S, et al; Working Groupon Incentives for Living Donation. Incentives fororgan donation: proposed standards for aninternationally acceptable system. Am J Transplant.2012;12(2):306-312.

14. Rippon S. Imposing options on people inpoverty: the harm of a live donor organmarket.J Med Ethics. 2014;40(3):145-150.

15. Danovitch G. Cash, rewards, and benefits inorgan transplantation: an open letter to SenatorArlen Specter. Curr Opin Organ Transplant. 2009;14(2):129-133.

16. Kahn JP, Delmonico FL. The consequences ofpublic policy to buy and sell organs fortransplantation.Am J Transplant. 2004;4(2):178-180.

17. Peters TG. Life or death: the issue of payment incadaveric organ donation. JAMA. 1991;265(10):1302-1305.

18. Salomon DR, Langnas AN, Reed AI, Bloom RD,Magee JC, Gaston RS; AST/ASTS IncentivesWorkshop Group (IWG). AST/ASTS workshop onincreasing organ donation in the United States:creating an “arc of change” from removingdisincentives to testing incentives. Am J Transplant.2015;15(5):1173-1179.

19. Delmonico FL, Martin D, Domínguez-Gil B, et al.Living and deceased organ donation should befinancially neutral acts. Am J Transplant. 2015;15(5):1187-1191.

20. United States Renal Data System. 2012 AnnualData Report: Epidemiology of Kidney Disease in theUnited States. Bethesda, MD: National Institutes ofHealth, National Institute of Diabetes and Digestiveand Kidney Diseases; 2012.

21. Langnas A, Salomon DR. Remove disincentivesto organ donation.New York Times. August 21, 2014.http://www.nytimes.com/roomfordebate/2014/08/21/how-much-for-a-kidney/remove-disincentives-to-organ-donation. AccessedMay 6, 2015.

22. Rodrigue JR, Kazley AS, Mandelbrot DA, HaysR, LaPointe RudowD, Baliga P. Living donor kidneytransplantation: overcoming disparities in live

kidney donation in the US: recommendations froma consensus conference. Clin J Am Soc Nephrol.2015;10(9):1687-1695.

23. McCarthy J. Seven in 10 Americans backeuthanasia. Gallup. June 18, 2014. http://www.gallup.com/poll/171704/seven-americans-back-euthanasia.aspx. AccessedNovember 18, 2014.

24. Hoeyer K, Schicktanz S, Deleuran I. Publicattitudes to financial incentive models for organs:a literature review suggests that it is time to shiftthe focus from ‘financial incentives’ to ‘reciprocity.’Transpl Int. 2013;26(4):350-357.

25. Barnieh L, Klarenbach S, Gill JS, Caulfield T,Manns B. Attitudes toward strategies to increaseorgan donation: views of the general public andhealth professionals. Clin J Am Soc Nephrol. 2012;7(12):1956-1963.

26. van BurenMC, Massey EK, Maasdam L, et al.For love or money? attitudes toward financialincentives among actual living kidney donors. Am JTransplant. 2010;10(11):2488-2492.

27. Halpern SD, Raz A, Kohn R, ReyM, Asch DA,Reese P. Regulated payments for living kidneydonation: an empirical assessment of the ethicalconcerns. Ann Intern Med. 2010;152(6):358-365.

28. Gordon EJ, Patel CH, SohnMW, Hippen B,Sherman LA. Does financial compensation for livingkidney donation change willingness to donate? AmJ Transplant. 2015;15(1):265-273.






Press CoverageA partial listing of press coverage about Views of US Voters on Compensating Living Kidney Donors, by Peters et al.

New survey adds to debate over paying people to donate organs — The Seattle Times, March 23, 2016

What would happen if Americans were paid to donate their kidneys? — Idaho Statesman, March 23, 2016

What would happen if Americans were paid to donate their kidneys? — Washington Post, March 23, 2016

What would happen if Americans were paid to donate their kidneys? — Chicago Tribune, March 23, 2016

Most people would donate a kidney - especially for money — Reuters, March 24, 2016

Most americans would donate a kidne y for cash — Newsweek, March 24, 2016

Offering To Pay For Kidneys Can Increase Donor Rate — Headlines and Global News, March 24, 2016

Most Americans Would Donate Their Kidneys, But For The Right Price — Parent Herald, March 24, 2016

Financial Compensation May Encourage Kidney Donation — Physician’s Briefing, HealthDay News, March 24, 2016

Paying For Kidneys May Boost Organ Donation Rates: Study — Tech Times, March 24, 2016

Scientists Make The Case For Buying Human Kidneys — Vocativ, March 24, 2016

Is-it-time-to-pull-the-trigger-on-financial-incentives-for-organ-donation? — Nephrology News, April 6, 2016

Study: $50,000 Would Make Most Americans More Likely to Donate a Kidney — Medical Ethics Advisor, June 24, 2016

Loma Linda University Medical Center Transplant Institute, Loma Linda, California

Michael E. De Vera, MD, FACS, Transplant Institute Director and Chief of Transplant Surgery

Pedro Baron, M.D., Member, ASTS, Director of Pediatric and Adult Liver Transplantation; Associate Professor of Surgery

Jill Weissman, Pharm. D., Transplant Pharmacist, Loma Linda Univer-sity Medical Center

Julia A. Nofrada, RN CCTN (Certified Clinical Transplant Nurse)

Leigh Aveling, DMin., MFT, Chaplain and Associate Professor, School of Religion

Loma Linda University

Charles J. Goodacre, DDS, MSD; Dean of the School of Dentistry; Past President, American Board of Prosthodontics; Board Member, American College of Prosthodontists; Redlands, CA

Scripps Green Hospital Transplant Center, La Jolla, California

Robert Carnevale, Chair-Development Committee

Iowa Health’s Center for Liver Disease, Des Moines, Iowa

Donald Hillebrand, MD, Hepatologist, Past Medical Director of Liver Transplant at Scripps Green Hospital, La Jolla, CA and at the Loma

Linda University Medical Center Transplant Institute, Loma Linda, CA

University of California San Diego Health System’s Center for Transplantation, San Diego, California and Center for Hepatobiliary Disease and Abdominal Transplantation (CHAT), University of Califor-nia, San Diego School of Medicine

Robert Gish, MD, Hepatologist, Co-Director Center for Hepatobiliary Disease and Abdominal Transplantation (CHAT)

Michel Mendler, MD, Hepatologist

Stanford University School of Medicine

Waldo Concepcion, MD, Member ASTS, FACS; Chief of Clinical Transplantation, Chief of Pediatric Kidney Transplantation, Associate Professor of Surgery, Stanford University School of Medicine.

“Save Lives Now New York” (SLNNY)

Ted Lawson, President and Executive Director

Rocco F. Andriola, Esq., Co-Founder and Co-Chairman

Thomas Hales, Co-Founder and Co-Chairman

Lewis Teperman, MD: Director of Transplantation and Vice Chairman of Surgery at New York University; Chair, Presumed Consent Commit-tee

Sally Satel, MD, Chair, Financial Incentives Legislation Committee

Influencial Supporters of Financial Incentives for Organ Donation


University of South Dakota, Sanford School of Medicine, Sioux Falls, South Dakota

Adela T. Casas-Melley, M.D., ASTS, Pediatric/Transplant Surgeon, Sanford Children’s Specialty Clinic; Associate Professor-Academic Faculty; Member, Editorial Board, Transplant Chronicles

Nazih Zuhdi Transplant Institute at INTEGRIS Baptist Medical Center, Oklahoma City, Oklahoma

Nicolas Jabbour, M.D., Member, ASTS, Medical Director

Cleveland Clinic

John J. Fung, MD, PhD, FACS, Chairman of the Department of Gen-eral Surgery and Director of the Transplant Center

Thomas E. Starzl Transplantation Institute, University of Pitts-burgh Medical Center

Raymond M. Planinsic, MD, Director of Hepatic, Intestinal and Multiv-isceral Transplantation Anesthesiology

VA Pittsburgh Healthcare System

Thomas Cacciarelli, M.D., Chief, VA Pittsburgh Healthcare System Liver Transplant Surgery Program

University of California – Davis Medical Center

Lorenzo Rossaro, M.D., Medical Director, Past Liver Transplant Pro-gram, Chief of Gastroenterology and Hepatology

University of Southern California Hospital, Los Angeles, Cali-fornia

Yasir A. Qazi, M.D., Medical Director, Kidney-Pancreas Transplant

Kianoush Banaei-Kashani, M.D., Keck School of Medicine of USC, Division of Nephrology

Jay Vidhun, M.D., Dept. of Nephrology, Kidney Transplant

Zeid Kayali, MD, MBA, Hepatologist

NYU Medical Center (New York University School of Medicine & Hospitals Center

Lewis Teperman, MD, Associate Professor, Chief and Director of Transplantation Surgery; Member: UNOS Liver & Intestine Commit-tee, Member, Board of Directors: American Liver Foundation, New York Regional Transplant Program and Latino Organization for Liver Awareness

Phil Berry, M.D., Advisory Committee for Organ Transplantation (ACOT) appointed by Secretary Tommie Thompson, Health & Human Services, 2001-2004; Past President, Texas Medical Association; President, Texas Medical Assoc. Foundation

Leonard J. Morse, MD; Commissioner of Public Health, Worcester, Massachusetts; Professor of Clinical Medicine and Family Medicine and Community Health, University of Massachusetts Medical School; Chair Emeritus, AMA CEJA; Past-President, Mass. Medical Society

Joseph Beezy, MD, Member House of Delegates: California Medical Association, Emergency Physician: Kaiser: Panorama City, CA

James N. Eustermann, M.D. FACS; Board Certified General Surgeon;

Diplomat, American Board of Surgery; Fellow, American College of Surgeons; Medical Director

Sally Satel, MD, Staff Psychiatrist, Oasis Drug Treatment Clinic, Washington, D.C.; Resident scholar, American Enterprise Institute; Coauthor of One Nation Under Therapy and author of PC, M.D.; editor of When Altruism Isn’t Enough: The Case for Compensating Kidney Donors (AEI Press, 2009) and many other publications in favor of new OD policies

Diane Furchtgott-Roth, former chief economist, U.S. Department of Labor; senior fellow, Hudson Institute

Professionals of Note

Richard Darling, DDS; Past National Public Citizen of the Year (NASW); Author: Coma Life, an autobiographical memoir of three liver transplants

Dave Courtney, Vice President and Director of Public Relations; The Presumed Consent Foundation

Bill Remak, Chairman, California Hepatitis C Task Force; Secretary, National Association of Hepatitis Task Forces; Member, Board of Directors of the Pharmacy Council on Hepatitis and Liver Disease.

Ralph H. Treiman, Past-President, American Liver Foundation, Great-er Los Angeles Chapter

Debbie Delgado Vega, Founder, President and CEO, Latino Organiza-tion for Liver Awareness (LOLA)

Steve Calandrillo, Professor of Law & Washington Law School Foun-dation Scholar, University of Washington School of Law, William H. Gates Hall, Seattle, WA

Harold Kyriazi, Ph.D., Department of Neurobiology, University of Pitts-burgh School of Medicine, Pittsburgh, PA; Founder: AHCSIOS (the Ad Hoc Committee for Solving the Intractable Organ Shortage; website www.ahcsios.org)

Alex Tabarrok, Associate Professor of Economics, Department of Economics, George Mason University; Research Director, The Inde-pendent Institute; Research Fellow, Mercatus Center

Bob Aronson, blogger on organ-donation and the need for new OD policies, heart-transplant recipient at age 68

Darla S. Leibel-Burrow, Executive Director, Nevada Hepatitis C Task Force

Cathy Teal, Executive Director, FAIR Foundation.

Jerry Jackson and Dan Brumett, CEO/President of “Miracles Do Happen Productions” (MDH Productions, Inc.) Jerry and Dan, with the help of a young boy, Jimmy Younger, who needs a new liver to survive, produced one of the most powerful and professional videos we’ve ever seen to promote organ donation.

Private Citizens

Romara Black, Palm Desert, CA; Art & Angela Curley, Larkspur, CA; Kress Darling, Palm Desert, CA; John & Jennie Johnson, Banning, CA; John Jurras, Palm Desert, CA; Larry E. Nazimek, Chicago, IL, liver-transplant recipient; Richard Reese, Sterrett, Alabama; Geoff & Stephanie Spencer, Manchester, NH; Carol Stafford, liver-transplant recipient, Apple Valley, CA; Robert & Nancy Zampieri, Charlotte, NC


Current Organ Transplant Legislation in CongressH.R.5344 - Organ Donation Clarification Act of 2016

Sponsor: Rep. Cartwright, Matt [D-PA-17] (Introduced 05/26/2016)

Committees: House - Energy and CommerceI

114TH CONGRESS 2D SESSION H. R. 5344

To clarify that pilot programs that honor and reward organ donation are not preempted by Federal criminal law and that offering and accepting such benefits in accordance with a pilot program are not criminal acts.

IN THE HOUSE OF REPRESENTATIVES

MAY 26, 2016 Mr. CARTWRIGHT (for himself, Mr. GRIJALVA, Mr. HONDA, Ms. EDDIE BER-

NICE JOHNSON of Texas, Mr. POLIS, Mr. RANGEL, Mr. YOUNG of Alaska, Mr. MARINO, and Mr. POSEY) introduced the following bill; which was referred to the Committee on Energy and Commerce

A BILL To clarify that pilot programs that honor and reward organ

donation are not preempted by Federal criminal law and that offering and accepting such benefits in accordance with a pilot program are not criminal acts.

Be it enacted by the Senate and House of Representa-1

tives of the United States of America in Congress assembled, 2

SECTION 1. SHORT TITLE. 3

This Act may be cited as the ‘‘Organ Donation Clari-4

fication Act of 2016’’. 5

SEC. 2. FINDINGS. 6

Congress finds the following: 7

VerDate Sep 11 2014 23:03 May 31, 2016 Jkt 059200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\H5344.IH H5344srad

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(1) As of January 2016, 121,000 people await 1

an organ transplant, with 100,000 of those people 2

waiting for a kidney, and average wait times are ap-3

proaching five years for a kidney, with twice as 4

many people being added to waiting lists as getting 5

a transplant. 6

(2) Living donor kidney transplants peaked in 7

2006 and have declined since due to a scarcity of liv-8

ing donors. 9

(3) Of the roughly two million Americans who 10

die annually, only 10,500 to 13,800, representing 11

less than one percent of all deaths each year, possess 12

major organs healthy enough for transplanting. 13

(4) On average, 22 people a day died while 14

waiting for an organ, with the majority of those peo-15

ple waiting on a kidney. 16

(5) In 2013 nearly 3,000 people were perma-17

nently removed from kidney waiting lists and 2,000 18

from liver, heart, and lungs waiting lists because 19

they became permanently too sick to receive a trans-20

plant. 21

(6) 90% of dialysis patients are not employed 22

because dialysis requires multiple treatments per 23

week which last several hours and leave patients 24

drained, thus creating a huge financial burden on 25


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the patients, their families, and the government 1

which is not included in the cost estimates above. 2

(7) A patient receiving a kidney transplant on 3

average has an additional 10–15 years of life at a 4

much more enjoyable and productive level as com-5

pared with remaining on dialysis, while receiving a 6

kidney from a living donor providing 4–8 years of 7

additional life as compared to receiving a kidney 8

from a deceased donor. 9

(8) As medical advances extend people’s lives as 10

they wait for an organ transplant, waiting lists will 11

get longer and the costs for individuals and the Fed-12

eral Government will increase significantly. 13

(9) Roughly seven percent of the Medicare 14

budget goes to the End Stage Renal Disease Pro-15

gram, with dialysis costing Medicare over $87,000 16

per patient per year, as Federal law dictates that 17

Medicare will cover dialysis for everyone who has 18

made minimal Social Security tax payments. 19

(10) A kidney transplant pays for itself in less 20

than two years, with each transplant saving an aver-21

age of over $745,000 in medical costs over a 10-year 22

period, 75 percent of which is savings to the tax-23

payers. 24


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(11) Experts project that if the supply of trans-1

plant kidneys could be increased to meet the de-2

mand, taxpayers would save more than 3

$5,500,000,000 per year in medical costs. 4

(12) The World Health Organization estimates 5

that 10 percent of all transplants take place on the 6

international black market, the last choice for des-7

perate patients facing an alternative of death, how-8

ever recipients often face infected kidneys and have 9

poor health outcomes and donors are often victim-10

ized. 11

(13) Present policy on domestic donation, which 12

is not evidence based and has never been subject to 13

studies or pilots to determine effectiveness in in-14

creasing the availability of donated organs and the 15

effectiveness of safeguards that prevent coercion or 16

exploitation, precludes all but altruistic donation, 17

prohibiting any form of incentive or benefit for do-18

nors. 19

(14) Experts are arriving at a consensus that 20

trials are necessary to find new methods of pro-21

moting additional organ donation which will save 22

lives and reduce organ trafficking. 23


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SEC. 3. CLARIFICATION OF CERTAIN PROVISIONS OF THE 1

NATIONAL ORGAN TRANSPLANT ACT. 2

(a) RELATION TO OTHER LAWS.— 3

(1) GOVERNMENTS ENCOURAGING ORGAN DO-4

NATION.—Section 301 of the National Organ Trans-5

plant Act (42 U.S.C. 274e) shall not— 6

(A) apply to actions taken by the Govern-7

ment of the United States or any State, terri-8

tory, tribe, or local government of the United 9

States to carry out a covered pilot program; or 10

(B) prohibit acceptance of any noncash 11

benefits provided by the pilot program under 12

subparagraph (A). 13

(2) NO PROHIBITION ON OTHER BENEFITS PRO-14

GRAMS.—Nothing in this section shall be construed 15

to prohibit actions, other than actions described in 16

this section, taken by any State, territory, tribe, or 17

unit of local government in the United States to pro-18

vide benefits for organ donation, including pursuant 19

to section 301 of the National Organ Transplant Act 20

(42 U.S.C. 274e). 21

(3) CLARIFICATION OF MEANING OF BEN-22

EFIT.—For purposes of the National Organ Trans-23

plant Act, valuable consideration does not include 24

the following: 25


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(A) Reimbursement for travel, lodging, 1

food during travel, and other expenses related 2

to donation. 3

(B) Provision of or reimbursement for de-4

pendent care needs related to donation. 5

(C) Reimbursement for lost wages related 6

to donation. 7

(D) Medical expenses related to donation 8

and all related follow up care including prevent-9

ative follow up care and medication. 10

(E) Paperwork or legal costs related to do-11

nation. 12

(F) Any insurance policy against the risk 13

of death or disability as a result of donating an 14

organ or the longer-term health effects of hav-15

ing donated an organ. 16

(b) DEFINITION.—In this section: 17

(1) The term ‘‘organ’’ means the human kid-18

ney, liver, heart, lung, pancreas, bone marrow ob-19

tained by aspirate, cornea, eye, bone and other mus-20

culoskeletal tissue, skin, and heart valves and other 21

cardio and vascular tissue. 22

(2) The term ‘‘covered pilot program’’ means a 23

pilot program approved by the Secretary of Health 24

and Human Services, subject to an ethical review 25


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board process, with a term of not more than 5 fiscal 1

years, for the purpose of measuring the effect of re-2

moving disincentives or providing a noncash benefit 3

that may increase the organ pool. Distributions of 4

organs from deceased donors under the pilot pro-5

gram shall be conducted only through the Organ 6

Procurement and Transplantation Network at a 7

transplant center approved by the United Network 8

for Organ Sharing or any other entity designated by 9

the Secretary of Health and Human Services. 10

Æ


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United States Government Accountability Office

Highlights of GAO-17-121, a report to congressional requesters

December 2016

NATIONAL INSTITUTES OF HEALTH

Kidney Disease Research Funding and Priority Setting

What GAO Found The National Institutes of Health (NIH), within the Department of Health and Human Services, is the primary federal agency that conducts biomedical research on kidney disease, as well as various other diseases and conditions. NIH’s budget—$30 billion in fiscal year 2015—mostly funds extramural research that supports research personnel working at universities, medical schools, and other institutions. The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)—one of NIH’s 27 institutes and centers (IC)—has primary responsibility for kidney disease research. NIH funding for biomedical research on kidney disease in fiscal year 2015 was approximately $564 million—an increase of 2.7 percent from fiscal year 2014. NIDDK provided the majority (60 percent) of this funding, supporting a broad range of projects, such as chronic kidney disease, end-stage renal disease (ESRD) treatment, and kidney donation. GAO also reviewed NIH research funding levels for other diseases and conditions in the United States—those that are associated with high mortality or are among the most prevalent chronic conditions. GAO found that funding for fiscal year 2015 varied widely among these diseases and conditions—for example, from $28 million for emphysema to nearly $5.4 billion for cancer. This variation in funding reflects a range of factors, including each IC’s mission, budget, and research priorities.

NIDDK obtains input from the broader kidney care community to develop its research priorities. To develop funding announcements that target high-priority research areas, NIDDK considers the kidney care community’s input in the context of its ongoing work and its knowledge of the current state of kidney disease research. NIDDK’s process for obtaining input from the kidney care community is iterative by design to help ensure that the institute’s research priorities evolve to reflect the latest research developments and needs of the kidney care community.

NIDDK’s Methods for Obtaining Input from Stakeholders to Set Research Priorities

Representatives from six private kidney care groups GAO interviewed generally agreed with NIDDK’s kidney disease research priorities; however, some of the groups’ members identified kidney disease topic areas they believe warrant more attention from NIDDK, such as a lack of kidney disease awareness in the general public. NIDDK agreed with this and other topics raised by the groups, and pointed out a variety of ongoing NIDDK programs that address these topics.

The Department of Health and Human Services provided technical comments, which GAO incorporated as appropriate.

View GAO-17-121. For more information, contact Elizabeth H. Curda at (202) 512-7114 or [email protected].

Why GAO Did This Study An estimated 17 percent of U.S. adults have chronic kidney disease—the most common form of kidney disease—a condition in which the kidneys are damaged and cannot filter blood sufficiently, causing waste from the blood to remain in the body. Kidney disease patients may progress to ESRD, a condition of kidney failure, which can cause death without dialysis or kidney transplant. In 2013, the Medicare program—which pays for ESRD treatment—spent $30.9 billion to treat approximately 530,000 patients. Given the high cost of kidney disease in terms of health consequences and federal spending, GAO was asked to examine how the federal government funds and prioritizes kidney disease research. This report describes (1) the level of NIH funding for biomedical research on kidney disease, and for other leading diseases and conditions; and (2) how NIDDK sets priorities for kidney disease research.

To describe NIH funding for research on kidney disease and other diseases and conditions, GAO selected leading diseases and conditions (based on mortality and prevalence) and analyzed their levels of research funding based on NIH data for fiscal year 2015. To describe how NIDDK sets priorities for kidney disease research, GAO reviewed documents—including those on research portfolios and strategic planning—from NIDDK, NIH, and other relevant federal agencies. Also, GAO interviewed agency officials and private kidney care groups representing a broad range of perspectives.

Read full Report to Congressional Requesters by the United States Government Accountability Office at http://www.gao.gov/assets/690/681714.pdf


A Cost-Benefit Analysis of Government Compensation of Kidney DonorsAbstractFirst published: 16 October 2015; P. J. Held, F. McCormick, A. Ojo, J. P. Roberts

Full article to follow abstract.

From 5000 to 10 000 kidney patients die prematurely in the United States each year, and about 100 000 more suffer the debilitating effects of dialysis, because of a shortage of transplant kidneys. To reduce this shortage, many advocate having the government compensate kidney donors. This paper presents a comprehensive cost-benefit analysis of such a change. It considers not only the sub-stantial savings to society because kidney recipients would no longer need expensive dialysis treatments—$1.45 mil-lion per kidney recipient—but also estimates the monetary

value of the longer and healthier lives that kidney recipients enjoy—about $1.3 million per recipient. These numbers dwarf the proposed $45 000-per-kidney compensation that might be needed to end the kidney shortage and eliminate the kidney transplant waiting list. From the viewpoint of society, the net benefit from saving thousands of lives each year and reducing the suffering of 100 000 more receiv-ing dialysis would be about $46 billion per year, with the benefits exceeding the costs by a factor of 3. In addition, it would save taxpayers about $12 billion each year.


A Cost-Benefit Analysis of GovernmentCompensation of Kidney Donors

P. J. Held1,*,†, F. McCormick2,†, A. Ojo3

and J. P. Roberts4

1Department of Nephrology, Stanford University,Stanford, CA2U.S. Economic and Financial Research, Bank of America,San Francisco, CA (retired)3Department of Nephrology, University of MichiganHealth Systems, Ann Arbor, MI4Department of Surgery, University of California SanFrancisco Transplant Service, San Francisco, CA�Corresponding author: Philip J. Held, [email protected]†Authors Held and McCormick are co-first authors on thiswork.

This is an open access article under the terms of theCreative Commons Attribution-NonCommercial-NoDerivsLicense, which permits use and distribution in anymedium, provided the original work is properly cited, theuse is non-commercial and no modifications or adaptationsare made.

From 5000 to 10000 kidney patients die prematurely inthe United States each year, and about 100000 moresuffer the debilitating effects of dialysis, because of ashortage of transplant kidneys. To reduce this shortage,many advocate having the government compensatekidney donors. This paper presents a comprehensivecost-benefit analysis of such a change. It considers notonly the substantial savings to society because kidneyrecipients would no longer need expensive dialysistreatments—$1.45millionperkidney recipient—butalsoestimates themonetaryvalueof the longerandhealthierlives thatkidney recipientsenjoy—about$1.3millionperrecipient. These numbers dwarf the proposed $45000-per-kidney compensation that might be needed to endthe kidney shortage and eliminate the kidney transplantwaiting list. From the viewpoint of society, the netbenefit from saving thousands of lives each year andreducing the suffering of 100000more receiving dialysiswould be about $46 billion per year, with the benefitsexceeding the costs by a factor of 3. In addition, itwouldsave taxpayers about $12 billion each year.

Abbreviations: ESRD, end-stage renal disease; NOTA,National Organ Transplant Act; QALY, quality-adjustedlife-year; SRTR, Scientific Registry of TransplantRecipients; USRDS, US Renal Data System

Received 03 May 2015, revised 10 August 2015 andaccepted for publication 10 August 2015

Introduction

In June 2014, the American Society of Transplantation and

the American Society of Transplant Surgeons held the joint

Workshop on Increasing Organ Donation in the United

States. They recently released a meeting report (1) on the

workshop that concluded, ‘‘...we should be working

together along the arc of change to remove remaining

disincentives, explore opportunities to either change or

modify NOTA (National Organ Transplant Act (2)), and lay

the groundwork for the next steps with our professional

colleagues, experts in economics, law and ethics, our

partners in Congress and agencies responsible for US

health policy and the American public.’’

This paper is a response to that invitation. It provides a

comprehensive cost-benefit analysis of a proposed change

to NOTA, that is, moving from our current kidney

procurement system in which compensation of donors is

legally prohibited to one in which the government (not

private individuals) compensates living kidney donors

$45 000, and deceased donors $10 000. Such compensa-

tion would be considered an expression of appreciation by

society for someone who has given the gift of life to

another. It could include an insurance policy against any

health problems that might develop in the future as a result

of the donation, including disability and death. Compensa-

tion for living donors could be paid in a delayed form, such

as tax credits or health insurance, so people who are

desperate for cash would not be tempted to sell a kidney.

Compensation for deceased donors would be paid to their

estate. All other aspects of the kidney procurement and

allocation processwould continue exactly as they are under

the current system. In particular, living donors would

continue to be carefully screened and informed of possible

hazards associatedwith kidney donation. Kidneyswould be

allocated as the organs from deceased donors are now—by

the federally funded and managed Organ Procurement and

Transplant Network (currently administered under contract

by United Network for Organ Sharing). (Satel (3) and Beard

et al. (4) have made similar proposals for government

compensation of donors.)

A program of government compensation of kidney donors

would provide the following benefits:

1. Transplant kidneys would be readily available to all

patients who had amedical need for them,whichwould

�C 2015 The Authors. American Journal of Transplantation publishedby Wiley Periodicals, Inc. on behalf of American Society of

Transplant Surgeons

doi: 10.1111/ajt.13490

877

American Journal of Transplantation 2016; 16: 877–885Wiley Periodicals Inc.


prevent 5000 to 10 000 premature deaths each year and

significantly reduce the suffering of 100 000 more

receiving dialysis.

2. This would be particularly beneficial to patients who are

poor and African American because they are consider-

ably overrepresented on the transplant waiting list.

Indeed, it would be a boon to poor kidney recipients

because it would enable them to reap the great benefits

of transplantation at very little expense to themselves.

3. Because transplant candidates would no longer have to

spend almost 5 years receiving dialysis while waiting for

a transplant kidney, theywould be younger and healthier

when they receive their transplant, increasing the

chances of a successful transplantation.

4. With a large number of transplant kidneys available, it

would be much easier to ensure the medical compati-

bility of donors and recipients, whichwould increase the

success rate of transplantation.

5. When a first kidney graft fails, the patient would be

readily able to obtain a second transplant kidney. (Other

considerationsmight delay a second transplant but not a

shortage of transplant kidneys.)

Table 1: Key estimates and calculations

Statistical Methods

878 American Journal of Transplantation 2016; 16: 877–885

Held and McCormick et al


6. Taxpayers would save about $12 billion each year.

Dialysis is not only an inferior therapy for end-stage renal

disease (ESRD), it is also almost 4 times asexpensive per

quality-adjusted life-year (QALY) gained as a transplant.

7. The incentive for Americans to participate in transplant

tourism or the black market for kidneys would virtually

cease.

8. The overall proficiency of kidney transplantation would

increase as the number of transplants increases.

Currently, the typical kidney transplant center performs

only two transplantations a month.

Given the controversial nature of the subject matter of this

paper, we have written 12 supplements to explain, justify,

and document our key estimates and calculations (which

are summarized in Table 1).

This paper updates and expands the path-breaking work of

Matas and Schnitzler (6). Themajor differences are that this

study (a) uses cost-benefit rather than cost-effectiveness

analysis, (b) uses a consensus monetary value of the extra

years of life gained from a transplant, (c) includes patient

obligations (copays) in the costs, (d) uses consensus values

of the quality of life before and after transplantation, (e)

analyzes compensation of deceased donors aswell as living

donors, (f) uses more recent data on outcomes from

dialysis and transplantation, and (g) is more transparent in

methodology (Supplement 4 provides a detailed compari-

son of the two papers.)

Methods

Cost-benefit analysis is a tool for analyzing public policy issues. It helps clarify

who wins and who loses from a given policy, by howmuch they win or lose,

and whether the policy makes society as a whole better or worse off. The

costs and benefits are conceived of in the broadest possible sense and

include the value of the longer and higher-quality lives that kidney transplant

recipients enjoy. These costs and benefits are calculated in greater detail in

Supplement 2. As is standard in cost-benefit analysis, costs and benefits in

the future are discounted back to the present. A consensus real (i.e. zero

inflation) interest rate of 3% per annum is used.

This analysis focuses on average (median) ESRD patients. It traces their

years of life after starting dialysis or receiving a kidney transplant (see

Supplement 12). Themedian lifetime (half-life) for a patient group is the time

it takes for 50% of them to die, and for kidney grafts, the time it takes for

50% to fail. The median is a good representative statistic for right-skewed

distributions such as survival. Our half-life estimates are based on 10-year

survival statistics. Our cost estimates are based on the costs of the median

dialysis patient and the median transplant patient.

Data

Whenever the literature provided a range of estimates of a variable, the

midpoint was used (which we will refer to as the consensus estimate). Our

own estimates deliberately err on the side of conservatism; i.e. they tend to

reduce the net benefits from having the government compensate kidney

donors. (If we had made more realistic estimates, the net benefits from the

government compensating kidney donors would have been even greater.)

All statistics on survival and costs originated with Medicare, which provides

this information through both the US Renal Data System (USRDS) (7) and the

Scientific Registry of Transplant Recipients (SRTR) (8). Our half-life estimates

were validated by comparison with published information and actual survival

statistics. (See Supplements 5 and 12 for details on our cost estimates.)

We use a consensus estimate of the value of a year of life of $200 000. (See

Item 1 of Supplement 1 [3,11,13]. See also Item 2 of Supplement 8, which

provides a sensitivity analysis using $100 000 and $300 000 per year of life.)

We followWhiting (12) in concluding the quality of life—on a scale of 0.0 for

death to 1.0 for perfect health—of a dialysis patient is about 0.52 before a

transplant and about 0.75 afterward (see Item 2 in Supplement 1).

Table 1 summarizes key estimates and calculations and points toward the

supplements where more detail can be found. Table 1 also discusses our

statistical methods.

Results

Costs and benefits at the current time whencompensating donors is prohibited(Note: The analysis of costs and benefits presented in

this section is abbreviated; greater detail is provided in

Supplement 2.) The left column of Table 2 shows

Table 2: Increase in life years from receiving a transplant compared with remaining on dialysis on waiting list

No donor

compensation (current

situation) (2015)

If donors are

compensated (steady state

after first 5 years) (2020)

Expected remaining lifetime (half-life

in years)

If remain on dialysis on

waiting list

12.3 15.0

If receive a transplant 19.3 24.9

Increase in life years from receiving a

transplant (vs remaining on dialysis

on waiting list)

Increase in life years (unadjusted) 7.0 9.9�

Increase in discounted QALYs 4.7 6.7

Half-life of transplant kidney graft 12.6� 15.7

In the current situation, when the graft fails in 12.6 years, 86% of the patients go back on dialysis. In the steady state case, when the first

graft fails, most patients will be readily able to obtain a second transplant kidney.�Based on only 14% receiving a second transplant. In the steady state case, the percentage may approach 100%; hence the number (9.9)

may approach 12 years.

Sources: USRDS 2013 annual data report (7); SRTR (2012) (8); Laupacis et al (1996) (14); Russell et al (1992) (15); Hirth et al (2000) (11).

American Journal of Transplantation 2016; 16: 877–885 879

Cost-Benefit: Gov. Compensation Kidney Donors


statistics for the current situation when donors are not

compensated. The top row indicates a typical patient

receiving dialysis can expect to live 12.3 years, while the

second row shows he or she can expect to live 19.3

years if the patient receives a kidney transplant. (The

latter half-life is the weighted average of the half-lives of

patients who have received kidneys from deceased and

living donors, as explained in detail in Supplement 12,

particularly Figure S12-5.) The third row shows the

difference (i.e. the transplant recipient can expect to live

an additional 7.0 years).

Since (as discussed above) the quality of life of a dialysis

patient is 0.52 before a transplant and 0.75 afterward, the

gain inQALYs for a typical kidney transplant recipient is 0.75

times the life expectancy after receiving a transplant minus

0.52 times the life expectancy if the recipient had remained

on dialysis.

After discounting, this yields a gain of 4.7 discounted

QALYs as a result of the transplant (row 4 of the left column

of Table 2). And valuing each of these years at the

consensus estimate of $200000 produces a lifetime

welfare gain of $937000 per kidney recipient (top row of

the left column of Table 3). It is well known that kidney

recipients benefit greatly from receiving a transplant, and

this puts a credible monetary value on it.

A second benefit of kidney transplants is the savings from

kidney recipients no longer requiring dialysis and other

medical treatments,which cost about $121 000 per patient-

year and would have continued for the 12.3-year expected

life of a dialysis patient on thewaiting list. But the half-life of

a kidney transplant is only 12.6 years (bottom row of left

column of Table 2), after which a typical kidney transplant

recipient has to return to dialysis for their remaining 6.7

years of life. Consequently, the lifetime net savings from

temporarily stopping dialysis would be $735000 (row 2 of

the left column of Table 3).

Turning to the other side of the ledger, the cost of the

transplant itself (i.e. payments at the time of the transplant

to all parties except the kidney donor) is about $145 000

(row 3 of the left column of Table 3). And compensation to

kidney donors is zero because it is currently legally

prohibited (row 4).

Medical costs following a transplant are about $32 000 per

year for the 12.6-year expected life of the kidney graft, plus

an additional $88 000 when the graft of the typical patient

fails in 12.6 years. Thus, the lifetime total costs are

$395 000, as shown in the fifth row of the left column of

Table 3.

The net welfare gain for society over the lifetime of a kidney

recipient (row 6 of the left column of Table 3) is just the net

of the rows above it, or $1 132000.

The bottom row of the left column of Table 3 shows

taxpayer savings over the lifetime of the kidney recipient.

Because taxpayers currently bear about 75% of the cost of

both dialysis and kidney transplants (see Supplement 5),

taxpayers would reap 75% of the benefits from patients

stopping dialysis after receiving a transplant. Specifically,

taxpayer savings are equal to 75% of the savings from

stopping dialysis, minus: (a) the cost of the transplant, (b)

compensation to donors (when allowed), and (c) medical

costs after the transplant. This comes to $146 000 per

kidney recipient.

Aggregating the per-recipient costs and benefits of the

left column of Table 3 over all of the kidney recipients in a

given year yields the left column of Table 4 (the top seven

rows of which have the same arrangement as Table 3).

For example, if the $146 000 taxpayer savings per kidney

recipient (from the bottom row of the left column of

Table 3) is multiplied by a conservatively high estimate of

17 500 kidney recipients each year, the result is the total

taxpayer saving from all kidney recipients each year,

Table 3: Present value of benefits and costs over a kidney recipient’s lifetime (per kidney recipient)

No donor compensation

(current situation)

If donors are compensated

(steady state after first 5 years)

Benefits

Welfare gain for kidney recipient (over a lifetime) $937000 $1335000

Savings from stopping dialysis (over a lifetime) $735000 $1454000

Costs

Cost of transplant (everything at time of transplant except

compensation to donors)

$145000 $236000

Compensation to donors $0 $73 000

Medical costs after transplant (including cost of kidney graft failure) $395000 $607000

Net welfare gain for society per kidney recipient $1 132000 $1873000

Addendum

Taxpayer savings per kidney recipient $146000 $403000





which is $2.6 billion per year (row 7 of the left column of

Table 4).

Life expectancies when donors are compensatedNow consider two subperiods after the government begins

compensating kidney donors: (a) the first 5 years, during

which we estimate the 94 000-patient waiting list for

kidneyswill be gradually eliminated, and (b) the subsequent

‘‘steady state’’ situation that will obtain after thewaiting list

has been ended. We will first estimate life expectancies

and then use them to estimate the costs and benefits of the

government compensating kidney donors.

We assume compensation of $45000 per kidney will be

sufficient to elicit an adequate supply of kidneys from living

donors, which, together with some additional kidneys from

deceaseddonors,will end thekidneyshortageandeliminate

thewaiting list in 5 years (see Item9ofSupplement 1). Thus,

during the 5-year transition period, the number of kidney

recipients will increase to about 43 000 per year. This is the

sum of the 31000 patients currently being added to the

waiting list each year, plus an additional 12 000 transplants

per year needed to reduce the waiting list to zero in 5 years

(see Supplement 11 for a discussion of the current capacity

of the transplant community).

To simplify comparisons of the current situation with the

postcompensation period, we will focus on the steady-

state case after the waiting list has been eliminated.

Because the supply of transplant kidneys will now be

sufficient to meet the demand, transplant candidates will

no longer have to wait about 5 years for a kidney. This has

two important implications. First, the average age of kidney

recipients will fall from 50 to 45 years. Second, kidney

recipients will now be far healthier because they will no

longer have to suffer the debilitating effects of several years

of dialysis. We estimate these considerations will increase

the life expectancy of the typical kidney recipient to about

24.9 years in the steady-state case from 19.3 years in the

current situation (shown in the second row of Table 2 and

discussed in Supplement 12). In contrast, if the kidney

patient had remained on dialysis, their life expectancy

would have been only 15.0 years (top row of the right

column of Table 2). This can also be seen in Figure 1, which

shows the two treatment paths ESRD patients can take in

steady state: dialysis or transplant. Note that the typical

kidney recipient in steady state will receive a second

transplant after the first graft fails in 15.7 years.

Costs and benefits in the steady-state caseWith these life expectancies,wecan calculate the increase in

discounted QALYs—and the benefits and costs of receiving

a kidney transplant—in the steady-state case, using the

same methodology we used in the current situation case.

A kidney recipient in this steady-state case gains an

additional 9.9 years of life from receiving a kidney transplant

(row 3 of the right column of Table 2), which translates into

6.7 discounted QALYs (row 4). When this is multiplied by

the consensus estimate of the value of a year of life, the

result is a lifetime welfare gain of $1 335000 per recipient

(top row of right column of Table 3).

The savings from stopping dialysis is again found by

multiplying the expected life of a dialysis patient by the

yearly medical cost of dialysis, which yields a lifetime gain

of $1 454000 (row 2 of Table 3). Note that this savings is

almost twice that in the current situation case because the

typical kidney recipient, instead of going back on dialysis

after the first graft fails, will, because of the greater

Table 4: Present value of benefits and costs for all kidney recipients in a given year (per year)

No donor compensation

(current situation)

If donors are compensated

(steady state after first 5 years)

17 500 kidney recipients

per year

35 000 kidney recipients per

year

Benefits

Welfare gain for all kidney recipients in a given year $16.4 billion/y $46.7 billion/y

Savings from stopping dialysis for all kidney recipients in a given year $12.9 billion/y $50.9 billion/y

Costs

Costs of transplants for all kidney recipients in a given year (everything

at time of transplant except compensation to donors)

$2.5 billion/y $8.3 billion/y

Compensation to donors for all kidney recipients in a given year 0 $2.6 billion/y

Medical costs after transplant for all kidney recipients in a given year

(including cost of kidney graft failure)

$6.9 billion/y $21.2 billion/y

Net welfare gain for society from all transplant recipients in a given year $19.8 billion/y $65.6 billion/y

Addendum

Taxpayer savings from all transplant recipients in a given year $2.6 billion/y $14.1 billion/y

Benefit-cost ratio for society 3.0

Benefit-cost ratio for taxpayers 1.7





availability of transplant kidneys, soon receive a second

transplant.

Thecostof thefirst transplant is, again, $145000.Thecostof

the second transplant is the same, and after discounting for a

delay of 15.7 years, this raises the total to $236000 (row 3).

The fourth row of the right column of Table 3 includes the

two $45000 government payments to kidney donors. The

first will occur at the time of the initial transplant, and the

second occurs 15.7 years later for a typical patient, for a

total cost of $73 000. Note that this number ismuch smaller

than the other costs and benefits in Table 3, especially the

huge welfare gain for kidney recipients and the savings

from stopping dialysis. One of the most surprising and

important results of this paper is how small the cost of

compensating donors would be compared with the very

large welfare gains for society that would result. Note also

that it is conservatively assumed that all donors will be paid

$45 000 per kidney, including those who previously were

willing to donate their kidneys for free. If some of the latter

are still willing to donate for free, that will just reduce the

costs and increase the net benefits from compensating

kidney donors. But if some now decline to donate at all,

the cost of replacing their donations with kidneys from

compensated donors is already included in the above

calculation. This conservative $45 000 estimate also covers

the small possibility that—after the government starts

compensating kidney donors—all kidneysmight come from

living donors and none from deceased donors.

The fifth row of the right column of Table 3 shows the

lifetime medical costs after a transplant. The 24.9-year life

expectancy of a transplant recipient (from row 2 of the right

column of Table 2) is multiplied by the yearly medical

expenses. To this is added the $88000 expense when

the kidney graft fails in 15.7 years, bringing the total to

$607 000. This is higher than in the current situation

because the typical transplant recipient will receive a

second transplant with its associated costs.

The net welfare gain for society over a kidney recipient’s

lifetime will be $1 873000 (row 6 of the right column of

Table 3). This is much larger than in the current situation

case because of the longer life expectancy of the kidney

recipient and the greater savings from stopping dialysis

(because the typical patient will not return to dialysis very

long after the first graft fails). The value of these benefits

would greatly exceed the additional costs of the second

transplant.

The bottom row of the right column of Table 3 shows how

much taxpayers would save over the kidney recipient’s

lifetime, which is $403000. This is more than twice as

much as in the current situation because the additional

savings from ending dialysis is much greater than the

additional costs of the second transplant.

Aggregating these costs and benefits per kidney recipient

in the right column of Table 3 over an estimated 35 000

transplant recipients per year during the steady state

period, results in the right column of Table 4. Note in

particular that – with a successful donor compensation

program – the net welfare gain for society (row 6 of Table 4)

would more than triple to $65.6 billion per year from

$19.8 billion per year currently. Note also that the savings

Figure 1: Two treatment paths for ESRD: dialysis or transplant (with donor compensation, steady state, 2020). ESRD, end-stage renal

disease.




for taxpayers would increase to $14.1 billion per year from

$2.6 billion per year (row 7 of Table 4). Finally, note in the

bottom two rows of Table 4 that—moving from the current

situation in which compensation of kidney donors is

prohibited to one in which the government compensates

donors—the benefit-cost ratio would be a large 3.0 for

society as a whole and 1.7 for taxpayers considered alone.

Discussion

Would government compensation of kidney donorsexploit the poor?One of the major arguments of those who oppose

compensating kidney donors is that poor people would

be more likely to become living donors than would rich

people, and, therefore, rich people would wind up buying

kidneys from poor people, thereby ‘‘exploiting’’ them. So, it

is argued, poor people would be worse off if kidney donors

were compensated than they are under the present

system.

Our cost-benefit framework reveals that this line of

reasoning is exactly backward. As explained in detail in

Supplement 3, the present system, in which compensation

of kidney donors is legally prohibited, has resulted in a huge

shortage of transplant kidneys that seriously harms all

transplant candidates—especially the poor, and especially

poor African Americans, because they are considerably

overrepresented on the kidney waiting list due to the

generally worse state of their health. In contrast, if the

government compensated kidney donors, it would greatly

increase the availability of transplant kidneys, making all

transplant candidates, especially the poor, much better off.

Indeed, the poor would enjoy the greatest net benefit

because they would gain the $1.3 million value of a longer

and healthier life, but almost all of the costs of transplanta-

tion for the poor person would be borne by the taxpayer

through Medicare and Medicaid.

So the current prohibition on compensating kidney donors,

which is supposedly intended to keep the poor from being

exploited, is in fact seriously harming them. And having the

government compensate kidney donors would be an

enormous boon for the poor.

Key Innovations

One of the key innovations of this paper is using a

consensus estimate of the monetary value of a QALY,

which enables us to employ cost-benefit analysis to

determine the net benefit to society from having the

government compensate kidney donors. Our value of

$200 000 per QALY is based on a careful review of the

literature (see Item 1 in Supplement 1). Moreover,

sensitivity tests of $100 000 and $300 000 per QALY

were performed (see Item 2 in Supplement 8) and revealed

that even for QALY values as low as $100 000, the net

welfare gain for society per recipient in steady state would

still be a large $1.2 million (vs $1.9 million using the

consensus QALY of $200 000).

On the other hand, our proposed donor compensation of

$45 000 per kidney is very conservative. It is three times the

estimate made by Becker and El�ıas (5), which is the only

serious attempt to estimate this parameter. Sensitivity

tests of $25 000 and $65000 per kidney were performed

and had very little effect on our results because donor

compensation is very small compared with the other

magnitudes in this analysis (see Item 1 of Supplement 8).

Indeed, donor compensation could be increased to

$375 000 per kidney before taxpayers would no longer

save money by paying for kidney transplantation instead of

dialysis. And compensation could be increased all the way

to $1200000 per kidney before society would no longer

enjoy a net welfare gain from transplantation.

Cost-effectivenessAlthough the central focus of this paper is a cost-benefit

analysis of the government compensation of kidney

donors, it also provides as a side benefit a comparison of

the cost-effectiveness of dialysis and transplantation (see

Supplement 10). In steady state, the cost of a QALY

obtained through dialysis is $186000, while the cost of a

QALY obtained through transplantation is only $49 000, less

than a third as much. Transplantation is clearly the more

cost-effective treatment for ESRD, as has been shown by

other studies (e.g. Matas and Schnitzler (6)).

Conclusions

The main conclusions of this analysis are that if the

government successfully implements a kidney donor

compensation program, the following would occur.

1. The lifetime value of a kidney transplant to a recipient

would be very large—about $1.3 million per recipient.

And the savings from stopping dialysis would be even

larger—about $1.45 million per recipient.

2. In contrast, even a conservatively high $45000-per-

kidney cost of compensating kidney donors would be

very small compared with the other costs and benefits.

Indeed, the total cost of compensating all donors in a

given year would be only about $2.6 billion per year. Yet

this small cost is the key to unlocking the great welfare

gains for transplant recipients and society, aswell as the

savings for the taxpayer.

3. The net welfare gain for society each year from kidney

transplants would more than triple from $20 billion per

year currently to $66 billion per year. This means the

transplant community would be able to do three times

as much good for society as it is currently doing. The




ratio of benefits to costs for society would be a very

large 3.0.

4. Having the government compensate kidney donors

would even be a good deal for taxpayers considered

alone. Because they currently bear most of the cost of

both dialysis and kidney transplants, they would reap

most of the benefits from more patients stopping

expensive dialysis treatments after receiving a trans-

plant. Taxpayers would save $403 000 for every dialysis

patient who receives a kidney transplant. The aggregate

savings for taxpayers would increase from $2.6 billion

per year currently to $14.1 billion per year, and the

benefit-cost ratio for taxpayers would be a healthy 1.7.

5. It would also be an especially good deal for poor people

considered alone because poor kidney recipients would

gain the $1.3 million value of a longer and healthier life,

but almost all of the costs of transplantation would be

borne by the taxpayer through Medicare and Medicaid.

6. The bottom line of this analysis is that if the government

compensated kidney donors, it would not only prevent

5000 to 10000 premature deaths each year in the

United States and substantially increase the quality of

life for almost 100 000 patients on dialysis, but the

benefitswould greatly exceed the costs for both society

in general and taxpayers and the poor in particular. One

of the most surprising and important results of this

paper is how large the welfare gain for society would be

compared with the very small cost of compensating

kidney donors.

7. We believe the estimates used in this paper are solidly

based in the literature. But these are matters about

which reasonable people can differ, so we invite others

to offer their own numbers. Because the benefits of the

government compensating kidney donors are so large

and the cost of compensating donors is so small, we are

confident that any reasonable estimates of these

numbers will arrive at the same conclusion we did—

that the benefits greatly exceed the costs.

8. Finally, we encourage thosewho oppose compensating

kidney donors to place a monetary value on their

concerns and to show how they outweigh the very large

net benefits demonstrated by this analysis. If they do,

they may discover—as we did in Supplement 6—that

many of the arguments usually made against compen-

sation of kidney donors turn out instead to be arguments

in favor.

Acknowledgments

The authors want to thank Robert Heller, PhD, and Heywood Fleisig, PhD,

who provided a careful reading of the paper at an early stage. Two editors

and two reviewers of the American Journal of Transplantation supplied

useful and thorough comments that greatly strengthened this work. Any

remaining errors are the responsibility of the authors. The data and statistics

reported here have been supplied by the USRDS and the SRTR. The

interpretation and reporting of these data are the responsibility of the authors

and in no way should be seen as an official policy or interpretation of the US

government.

Disclosure

The authors of this manuscript have no conflicts of interest

to disclose as described by the American Journal of

Transplantation.

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Supporting Information

Additional Supporting Information may be found in the

online version of this article.

Index of Supplements for: A Cost-Benefit Analysis of

Government Compensation of Kidney Donors

No. Name

Pg.

No.

1 Important Footnotes for Main Text 2–11

2 Detailed Calculations of Costs and Benefits 12–18

3 Compensating Kidney Donors Would Be a

Boon for the Poor

19–21

4 Comparison of Matas and Schnitzler with

Held and McCormick et al. (this paper)

22–23

5 Estimates of Transplant and Dialysis Costs 24–32

6 Some Arguments Against Compensating

Kidney Donors

33–35

7 Conservative Assumptions 36–38

8 Sensitivity Analyses 39–44

1. Compensation

2. Value of a QALY

3. Quality of Life

9 Living vs. Deceased Donors Under a Donor

Compensation Program

45–46

10 Cost of a Quality Adjusted Life Year:

Dialysis vs. Transplantation

47–48

11 Capacity of U.S. Kidney Transplant Centers 49

12 Estimating Half-Lives of Dialysis Patients,

Transplant Patients, and Kidney Grafts

50–66




1) The program would be a three year project in a designat-ed region. The designated region would be selected from those applying who fit the following criteria:

a) The region would include an OPO.

b) Program participation would be required of all hospital transplant centers in the region with active qualified kidney transplant programs with registered living donors.

c) The regional Donate Life Affiliate would be an active program participant.

2) A local registry/database would be created of all listed recipients in that region taken from UNOS database and in coordination with Donate Life’s donor registry for that region and an additional category or flag application intro-duced in the functionality of the existing program would indicate those persons that are now enrolled in the demon-stration project. Existing technology will be implemented to reduce cost and time to launch the project. Conservatively, an estimated two to four months will be required to launch the project.

3) Staffing would require 2 to 4 people to perform: program administration including reports to funding agency; track-ing; healthcare/patient liaison; research design; analysis of data collected on economic outcome, return on investment, lives saved and increase in donor pool, etc.

4) Medically eligible, registered, living kidney donors in the project region would be offered a $50,000 tax credit which could be used in the following ways:

a) The Living Donor may use the credit to pay current or future medicare deductibles, co-pays, premiums or medicines until exhausted. Should the Living Donor chose to use the credit towards future medical expenses, the credit would accrue interest at the going rate.

The payment arrangement would be reported to the Regional CMS Administrator, who in turn reports it to the appropriate national CMS office and the IRS.

The Organ Donation Credit would not taxed as income. However, the medical credit would be reported by the donor in his tax filing for the year the donation occurs. The IRS also receives the same information independently from CMS and UNOS for confirmation.

b) The Living Organ Donor may request up to a 50% or $25,000 as a “cash tax refund” to cover lost wages and other expenses as long as the remaining balance remains as a credit towards their future Medicare costs or the funds may be placed in a retirement account. The refund itself is not taxable income but any interest earned may be taxable. The money may also be used to pay unpaid debts to the IRS, but will not be subject to an IRS lien or government garnishment. No lean will be allowed to be placed against these funds that are held as a credit by CMS or IRS by creditors of the donor. However, that protection is dissolved for any refund amounts received directly in cash by the donor.

The FAIR Foundation supports peer-reviewed demonstration projects conducted by public and/or non profit entities for the purpose of of carrying out studies to increase organ donation and recovery rates, including financial incentives for living organ donation.

The FAIR Foundation does not endorse the following draft of a sample project plan. The draft below is presented as an example of the kind of demonstration concept which may provide evidence which would allow healthcare policy makers to make informed decisions regarding financial incentives for living organ donations.

Studies and Demonstrations

Sample Trial StudyDraft Outline of Projected Demonstration Project for Financial Incentives for Living Organ Donation


5) For those donors that wish to adhere to a complete altru-istic donation premise as it exists at the present, they may still register and donate but may opt out of taking the tax credit through the demonstration program. The donor in the project region will note their decline of organ donation credit when they register as a donor through Donate Life and on their tax return. (How many Living Donors opt out of the tax credit may prove to be an enlightening statistic.)

6) The tax credit plan may mitigate some of the concerns about “cash for organs” and creates a control mechanism that eliminates “payment in full” for a cash payment for organ donation. It provides some cash for the donor’s current expenses and/or the option to pay forward for their

own benefit or they may decline the organ donation benefit altogether. For the recipient, it is the gift of life, freedom from dialysis and a return to a productive life. The govern-ment benefits by reducing Medicare costs due to savings generated by reducing the number of people on dialysis, ensuring better outcomes from transplantation and return-ing patients to the tax paying work force. Most importantly, more lives are saved through a significant increase in the number of willing, living kidney donors. This is a win win for all stakeholders.

We estimate a working budget of $1.8 million to $3 million dollars for the demonstration project to accomplish measurable and evidentiary results over a three year period.

Continuation of the Draft Outline of Projected Demonstration Project


DIRECTORS AT LARGEPhil Berry, MD

David Courtney, Patient Advocate

Art Curley, Attorney

Michael E. De Vera, MD, FACS,

John J. Fung, M.D., Ph.D., FACS

Ray Hill, Patient Advocate

Donald Hillebrand, MD, Hepatologist

Philip Rugo, Patient Advocate

Richard Darling, DDSFounder, President, CEO & Chairman of the Board, EmeritusKress DarlingVice President & Treasurer, Emerita

Cathy TealExecutive Director

Robert Gish, MD, Co-Director Center for Hepatobiliary Disease and Abdominal Transplantation (CHAT), University of California, San Diego School of Medicine; Past Medical Director of the Transplant Program at California Pacific Medical Center; Member of the American Assoc. for the Study of the Liver, the American Society of Transplant Physicians, and the International Liver Transplant Society, San Diego, CA.

Thomas G. Peters, MD, FACS, FASN, Professor of Surgery, Emeritus, at the Univ. of Florida College of Medicine. He directed the University’s kidney transplant programs in Jacksonville & Gainesville for more than two decades. Dr. Peters is the “father” of the effort to increase organ do-nation with Financial Incentives (FI). He published the first relevant U.S. papers on Fi (JAMA, 265: 1302-1305, March 13,1991) Life or Death: The Issue of Payment in Cadaveric Organ Donation and Organ Donors and Nondonors, An American Dilemma.

Bill Remak, B.Sc.MT, BA PHA; FAIR Foundation Secretary; Chairman, California Hepatitis C Task Force; Steering & Communications Committee Member, California Chronic Care Coalition; Chair, National Association of Hepatitis Task Forces; Patient Advocate: Liver Disease & Stem Cell Research. Petaluma, CA.

Jack Burke, Accountant, owner of Burke Management Accounting Services, FAIR Treasurer and patient advocate for patients with liver disease. Palm Springs, CA.

Thomas G. Peters, MDPresident

Robert Gish, MDVice President

William RemakSecretary

Jack BurkeTreasurer

FAIR Foundation Board of Directors



54705 Avenida Alvarado, La Quinta, CA 92253 Tel 877.315.1791 / Fax 877.315.2791

fairfoundation.org

Documents

The FAIR Foundation Concept for Organ Donation Reform: An ... · (Figure 1B). There was an increase of 20% in deceased donor kidney transplants from 2004 to 2013 and a 14% decrease