Opinion and Hypothesis

Disability and kidney transplantation in theUnited States

McGee J, Jackson NR, Slakey DP. Disability and kidney transplantationin the United States. Clin Transplant 2012 DOI: 10.1111/j.1399-0012.2012.01612.x. © 2012 John Wiley & Sons A/S.

Abstract: Transplantation is the treatment of choice for patients withend-stage renal disease. Despite complete or partial restoration of renalfunction, many recipients after transplant continue to self-identify asdisabled. It is a designation required for federal healthcare assistance pre-transplant, but in some cases, post-transplantation, the designation ismisapplied. When kidney recipients bear the label of disabled, regardlessif the disability is real or perceived, they are less likely to participate inwork and social activities. Although transplantation improves quality oflife, for many recipients the designation of disability can extend anunintended, negative impact. It is well recognized that kidney recipientsreturn to employment, education, and social activities aftertransplantation. However, there is a portion of the recipient populationthat can work but chooses not to engage. A large part of the phenomenonis related to disability status and the federal financing of kidney disease.This paper summarizes the history of the relationship between disabilityand kidney transplantation, the potential pitfalls associated with therelationship, and evidence-based strategies designed to mitigate or lead tomitigation of the unfavorable effects associated with misappropriated,perceived disability after kidney transplantation.

Jennifer McGee, Nicole R.Jackson, Douglas P. Slakey

Department of Surgery, Tulane University

School of Medicine, New Orleans, LA, USA,

Key words: disabled – education –

employment – independence – Medicare

Corresponding author: Jennifer McGee,

Department of Surgery, Tulane University

School of Medicine, 1430 Tulane Ave., SL22,

New Orleans, LA 70112-2669, USA.

Tel.: 1 504 988 9832; fax: 1 504 988 3793;

e-mail: jmcgee@tulane.edu

Conflict of interest: None.

Accepted for publication 29 December 2011

Compared with patients on hemodialysis, kidneytransplant recipients have lower rates of mortality(1) and improved quality of life (2, 3). Thus, trans-plantation is the treatment of choice for patientswith end-stage renal disease. It is well recognizedthat recipients after transplant are capable ofreturning to employment (4–6) and leisure activi-ties (7, 8). However, there is little knowledge onthe phenomenon in which those capable of post-transplant activities choose not to engage. It hasbeen suggested that perceived disability by kidneyrecipients is a significant barrier to participation inactivities after transplant (9, 10). We summarizethe origin of the intertwining of disability and kid-ney transplantation, discuss the unintended conse-quence of the link, and present research-supportedaction plans designed to weaken perceived, recipi-ent post-transplant disability and eliminate themisuse of disability designations.

Funding of chronic kidney disease and the history

of disability

Prior to 1972, financing renal replacement therapywas difficult as dialysis and transplantation werenew technologies and extremely expensive (Fig. 1).During this era, the burden of chronic kidneydisease (CKD) threatened the solvency and healthof middle- and working-class patients. Publicresources such as Medicare, Medicaid, andresearch grants from the National Institutes ofHealth were available as subsidy (11). Fundingnever met need, and as technologies refined,research capital became limited. In the 1970s,experts estimated that 6000 people with CKD diedeach year because of inadequate financial supportfor dialysis and transplantation (11).After years of lobbying by special interests

groups, Congress committed to supporting CKD

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© 2012 John Wiley & Sons A/S

Clin Transplant 2012 DOI: 10.1111/j.1399-0012.2012.01612.x

in 1972. A CKD amendment to the Social SecurityAct of 1972 (HR-1 amendment) was introduced inSeptember and passed the following summer(Table 1) (11). While the original Medicare bill of1965 covered only the hospital costs of the elderly,the Social Security Act of 1972 expanded supportto include those permanently disabled, regardlessof age. Thus, prior to the passage of the HR-1amendment, patients with CKD who worked werenot eligible for federal assistance. The HR-1amendment classified all end-stage renal patientsas disabled and improved equity in access to renalreplacement therapies. However, passage of theHR-1 amendment also generated an unintendedeffect.

Disability and kidney transplantation

According to the Americans with Disabilities Act,a disabled individual is a person with a physical ormental impairment that substantially limits one ormore major life activities. The definition includes

persons with a record of impairment and those per-ceived by others to have impairments (12). TheDisabilities Act is purposely broad to avoid errone-ous exclusions, but its wide inclusion spectrumprovides opportunity for misapplication (13).

In a recent cross-sectional study, researchersreported that 80% of recipients felt significantlydisabled since the initiation of dialysis, and morethan half (63%) believed they were disabled solelybecause of their status as a transplant recipient(10). Patients with CKD and kidney transplantrecipients may perceive themselves as disabledbecause of prolonged periods of illness and inca-pacity associated with their disease process(14, 15).

A pair of investigations has shown that approxi-mately 60% of kidney recipients report capacity towork full or part time post-transplant [a percent-age similar to those recipients who believed theywere disabled solely because of transplantation(10)]; however, only 30–40% of patients do so (9,10). The work discrepancy is most often attributedto recipients’ fear of losing federal healthcare bene-fits once employed (9, 10, 16). Current federal regu-lations stop funding maintenance immunosuppressionmedications at 36 months after transplant forthose patients who qualified for assistance becauseof kidney disease exclusively (17, 18). The three yrof support are intended to afford patients the timenecessary to re-establish pre-transplant capacitiesor create new ones including independence fromgovernment subsidy. Although limited, there aresafety nets in the event of coverage gaps – stateand federal gap assistance programs, charitablefoundations, and pharmaceutical support pro-grams (18). Still, many kidney recipients assumethat with loss of disability status comes loss ofbenefits, thus the inability to purchase criticalmedications.

The problem with kidney recipients self-assign-ing disability in the absence of true impairment

Provided federal health insurance for hospital costs for individuals >65 years old and/or

those economically disadvantaged

Limited health insur-ance exclusions

based on preexisting medical conditions

Expanded the Social Security Amendments of 1965 to include indi-

viduals permanently disabled, regardless of

age

Changed federal health in-surance coverage for kid-

ney transplant immunosup-pression medications to

lifetime for those meeting established age and disabil-

ity criteria

Provided civil rights protec-tion against discrimination based on physical and/or

mental impairments

Social Security Act of 1972

(H.R.-1 Amendment)

Social Security Amendments

of 1965

Benefits Improvement and

Protection Act of 2000

Americans with Disabilities Act

of 1990

Health Insurance Portability and

Accountability Act of 1996

Fig. 1. Summarized chronology of major, federal legislation in the United States impacting individuals with chronic kidney disease.

Table 1. Summary of the HR-1 amendment – inclusion criteria for

the federal funding of CKD

Patient age < 65 yr

Patient fully insured or

Entitled to monthly insurance via Social Security Act

Spouse or dependent of an individual fully insured

Spouse or dependent of an individual fully insured entitled to

monthly insurance via Social Security Act

Patient medically determined to have CKD requiring dialysis or

transplantation

Patients who shall be deemed disabled for the purpose of

coverage under Medicare

Medical eligibility begins after 3 months from the initiation of

dialysis and ends at 12 months after kidney transplantation

Federal reimbursements limited to specialized kidney disease

treatment centers

CKD, chronic kidney disease.

Adapted from (11).

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and avoiding engagement in post-transplant workis that compared with employed recipients, thosewho are unemployed have significantly lower glo-merular filtration rates (44 vs. 56 mL/min/1.73 m2,p = 0.05) and decreased physical and social func-tion (6). Monroe and Raiz, after questioning morethan 100 kidney transplant recipients about return-ing to work, concluded that combined psychologi-cal and medical concerns dominate decisionmaking (17). According to Slakey and Rosneralong with Winsett and colleagues, many patientslack adequate information and/or tools needed toachieve their ambitions (10, 19). Recipients reportinadequate vocational rehabilitation, skills train-ing, job placement assistance, education, and self-esteem as significant barriers to employment aftertransplantation (10, 17, 19). Kidney recipients alsoreport that a “lack of time,” because of personalresponsibilities (such as caring for family mem-bers), interferes with employment (10). Patientsfeel that such obstacles encourage the perceptionof disability (10).

Slakey and Rosner also found that at least 30%of recipients, regardless of education level, desirehelp securing employment after transplantation(10). Employment and similar independence activi-ties promote patient empowerment, and it specu-lated that employed recipients may be moreinclined to actively participate in their own healthdecisions (15). It is recognized that gainful employ-ment is associated with a person’s sense of well-being (16).

Evidence-based interventions for changing

perceptions

Structured education

In a cohort of 51 kidney recipient candidates,Wilkins and colleagues conducted a multidisciplin-ary educational program focused on expectationsof recipients post-transplant. Investigators foundthat compared with pre-transplant activities of thecandidates before the educational program, therecipients after experiencing the educational pro-gram demonstrated greater participation in activi-ties of independence (15). Focus areas includedexpectations on (i) returning to work, (ii) assumingthe burden of medication costs, and (iii) ensuringdependable social support (15). Study officials metwith participants a minimum of four times toaddress patient concerns and reinforce projectgoals.

At the end of the study, compared with 44% ofpre-transplant candidates, 62% of post-transplantrecipients described themselves as non-disabled

and were less frequently dependent on Medicareand Medicaid for health insurance (20% vs. 23%)(15). After participating in the education program,compared with pre-transplant, recipients weremore likely to hold private insurance (45% vs.33%). Also, the recipients were more likelyemployed outside the home and engaged in “ageand socio-economically appropriate activities”(15).This experience along with the knowledge that

recipients find transplant team members highlyinfluential in changing self-perceived disability (10)suggests that modifying opinions of disabilityamong transplant recipients is achievable with clin-ical, social, and economic benefit.

Extended medication coverage

It is theorized that under current federal policy,kidney transplant recipients have little to noincentive to pursue employment and/or third-party insurance coverage (9, 20). Since the late1980s, Medicare, the largest payer after transplan-tation, covered 80% of maintenance immunosup-pression costs, incrementally increasing years ofsupport from one and maxing out at three by1995. The Benefits Improvement and ProtectionAct of 2000, Public Law 106-554, expanded drugcoverage to lifetime for those eligible for Medicarebenefits based on age and disability criteria (21).Patients covered by Medicare solely because ofkidney disease do not qualify for assistance.Although the act increased benefits for vulnerablepopulations, its passage may have been a pitfallregarding the misuse of disability labeling afterkidney transplant.Yen and co-investigators advocate for extending

Medicare immunosuppression coverage for a life-time for all kidney transplant recipients in an effortto eliminate the practice of misapplication of dis-ability status (20). After cost analysis, they identi-fied that extension of benefits (i) improvedexpected allograft survival at five and 20 yr post-transplant (78% vs. 76% and 48% vs. 39%,respectively), (ii) improved median projectedpatient survival post-transplant (29 yr vs. 24 yr),(iii) showed a greater discounted quality-adjustedlife years (8.8 vs. 8.5 yr), and (iv) produced greaterdiscounted costs to the current Medicare system(approximately $268 000 vs. $234 000) (20).However, there is an ongoing debate about how

much to broaden coverage. Page and Woodwardpostulate that expanding federal support to all kid-ney recipients is too costly (22). Considering Medi-care’s burden exclusively, their research found thatextending coverage only to those recipients in the

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lowest income quartile provided clinical and finan-cial benefit.Expanding funding to promote independence

and a sense of ability in kidney transplantation iscounter to the traditional concept that reliance ongovernment assistance fosters dependence and asense of disability. As evidence shows that (i) manykidney recipients have capacity and desire to workafter transplantation but (ii) chose not to do so forfear of losing federal funding support, it is reason-able to speculate that the security of having life-time or longer-term immunosuppression subsidymay encourage recipient participation in appro-priate post-transplant employment and socialactivities.

Other potential interventions

As presented earlier, many kidney recipients lackthe information and tools required to get involvedin post-transplant activities. Despite barriers, it isnot uncommon for patients to solicit members ofthe transplant team for assistance with finding ajob after transplantation (10). In fact, for somerecipients, transplant team members are the majorsupport unit changing their perceptions from dis-abled to able bodied (10). Taken together, a trans-plant team member taking an active role infacilitating a recipient’s employment is ideal. Con-necting patients to self-empowerment opportuni-ties such as the Social Security Administration’sTicket to Work Program (23) is an example.Finally, a study of elderly kidney transplant can-

didates found in tests of mobility and activities ofdaily living that compared with matched controlswith other co-morbid conditions, the kidney candi-dates had significantly lower performance scoresbut were less likely to perceive themselves as dis-abled (24). Because progression of CKD can beslow and indolent, investigators speculated thatadvanced age candidates may not have relatedtheir physical impairments to their illness (24). Per-haps if the sense of ability among candidates ofadvanced age persists after transplantation, theycould function as mentors to younger kidneycandidates and recipients.

Conclusion

Current literature supports that kidney transplantrecipients involved in organized activities fare bet-ter than those not involved. However, maximizingthe number of eligible participants is challenging,in part owing to patient perceived disability. Evi-dence shows that modifying patient perceptionsand improving recipient engagement in activities

are attainable. Given the magnitude of influence ofperceived disability, it is conceivable that its pres-ence or absence should be the newest metric forsuccess or failure in kidney transplantation.

Authors’ contributions

McGee contributed to the concept, design, draft-ing, critical revision, and approval of the manu-script. Jackson contributed to the drafting, criticalrevision, and approval of the manuscript. Slakeycontributed to the concept, design, critical revision,and approval of the manuscript.

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