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Rejecting Organs: The Organ Allocation Process and the Americans with Disabilities Act

Published online by Cambridge University Press:  24 February 2021

Angela T. Whitehead
Angela T. Whitehead*
Affiliation:
1996, Cornell University; 1999, Boston University School of Law
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Extract

On January 23, 1996, thirty-five-year-old Sandra Jensen became a pioneer in medical history as the first person with Down's Syndrome to undergo heart and lungs transplants. Based on her mental retardation, Stanford University and the University of California at San Diego initially rejected Jensen's candidacy for the procedure. The surgeons believed that a person with Down's Syndrome lacked the mental capacity to navigate through possible complications that could occur after the transplantation, even though Jensen, a disabilities activist, had lived on her own since the age of twenty. Eventually, overwhelming pressure from community members, advocacy groups, family and friends forced the hospitals to reconsider and, after closer inquiry, Stanford surgeons admitted to misjudging Jensen's ability to comprehend her condition and to handle her own care. A month after surgery, Jensen took her first trip outside Stanford Medical Center to begin her journey toward recovery.

Jensen expressed the hope that her story would “open doors for others with disabilities who are in need of transplants.” In fact, her experience prompted local politicians to consider legislation barring discrimination against mentally disabled individuals in need of transplants.

Type
Notes and Comments
Information
American Journal of Law & Medicine , Volume 24 , Issue 4 , 1998 , pp. 481 - 497
Copyright
Copyright © American Society of Law, Medicine and Ethics and Boston University 1998

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References

1 See Cynthia Hubert, Hospital Could Release Transplant Pioneer Today, SACRAMENTO BEE, Feb. 27, 1996, at B4, available in 1996 WL 3285400.

2 See id.

3 See id.

4 See id.

5 See id.

6 Id.

7 See Cynthia Hubert, Transplant Pioneer Loses Battle for Life, SACRAMENTO BEE, May 25, 1997, at A1, available in 1997 WL 3289393 (stating that the California State Legislature passed a law stipulating that medical providers could not deny organ transplants to people based on the person's disability).

8 See Hubert, supra note 1.

9 42 U.S.C. §§ 12101-12213 (1994).

10 See Orentlicher, David, Deconstructing Disability: Rationing of Health Care and Unfair Discrimination Against the Sick, 31 HARV. C.R.-C.L.L.REV. 49, 51 (1996).Google Scholar

11 See 42 U.S.C. § 12101(a)(3), (b)(1).

12 See Orentlicher, supra note 10, at 57 (explaining how apparently benign criteria have a disparate impact on persons with disabilities).

13 See 42 U.S.C. § 12111(2) (defining a “covered entity” to be “an employer, employment agency, labor organization, or joint-labor management committee”).

14 42 U.S.C. § 12182(b)(2)(A)(ii).

15 Id.

16 42 U.S.C. § 12182(b)(2)(A)(iii). The ADA defines “undue hardship” generally as “an action requiring significant difficulty or expense, when considered in light of” factors such as nature and cost of accommodation and overall financial resources of the entity involved. See 42 U.S.C. § 12111(10)(A)-(B) (1994).

17 See Gomez v. American Bldg. Maintenance, 940 F. Supp. 255 (N.D. Cal 1996) (finding the ADA does not require an employer to create a new position to accommodate a disabled worker).

18 See 42 U.S.C. § 12181(7)(F).

19 See 42 U.S.C. § 12182(b)(2)(A)(i).

20 See id.

21 See Orentlicher, supra note 10, at 58 (noting the Second Circuit's narrow interpretation of section 504 of the Rehabilitation Act's protections). Courts tend to view medical judgments as distinct from judgments in other settings, such as education or employment. See generally Valentine v. American Home Shield Corp., 939 F. Supp. 1376 (N.D. Iowa 1996) (recognizing part-time employment as a possible reasonable accommodation under the ADA); McCoy v. Pennsylvania & Light Co., 933 F. Supp. 438 (W.D. Pa. 1995) (stating that reassignment of a nuclear power plant employee with alcoholism to a position that did not require a security clearance was a reasonable accommodation).

22 729 F.2d 144 (2d Cir. 1984).

23 29 U.S.C. §§ 701-797 (1998). The Rehabilitation Act prohibits discrimination against people with disabilities in activities receiving federal financial assistance. An individual qualifies for protection under the Rehabilitation Act if she has a physical or mental impairment substantially limiting one or more life activities, has a record of such an impairment or is regarded as having such an impairment. See id. § 706(7)(B). Additionally, the individual must be otherwise qualified for the service or participation in the activity. See id. § 794. In University Hospital, the Department of Health and Human Services (HHS) brought suit to gain access to the hospital's records to determine if it unlawfully discriminated against the child. See 729 F.2d at 146. Section 504 of the Rehabilitation Act and the ADA have similar statutory language protecting individuals with disabilities and the courts have interpreted them similarly. See Orentlicher, supra note 10, at 55, 58-59.

24 See University Hospital, 729 F.2d at 146.

25 See id. at 156.

26 Orentlicher, supra note 10, at 61.

27 See Peters, Philip G. Jr., When Physicians Balk at Futile Care: Implications of the Disability Rights Laws, 91 Nw. U. L. REV. 798, 812 (1997).Google Scholar

28 See id. at 813.

29 See id. Such a theory places tremendous power in the hands of doctors to influence the decisions made by family members regarding their loved ones’ medical treatment. See Bowen v. American Hosp. Ass'n, 476 U.S. 610, 653 n.7 (1986) (White, J., dissenting).

30 See Orentlicher, supra note 10, at 61 (“Under the ‘bona fide medical judgment standard’ the issue is not whether the person's need for treatment is related to the disability but whether the ability to benefit from treatment is related to the disability.”) (original emphasis).

31 See Mintz, Benjamin, Note, Analyzing the OPTN Under State Action Doctrine—Can UNOS Organ Allocation Criteria Survive Strict Scrutiny?, 28 COLUM. J.L. & SOC. PROBS. 339, 340 n.9 (1995)Google Scholar (noting that drugs “increased kidney transplant recipients’ one-year survival rates from 50% to 80% and liver patients’ one-year survival rates from 35% to 70%”).

32 See S. REP. NO. 98-382, at 2 (1984), reprinted in 1984 U.S.C.C.A.N. 3976, 3977 [hereinafter SENATE REPORT]; see also Mintz, supra note 31, at 340-41. “The number of patients on waiting lists for organ transplantations far exceeded the available supply of transplantable organs—a recurring and ongoing problem.” Blumenson, James F., Federal Organ Transplantation Policy: A Time for Reassessment?, 22 U.C. DAVIS L. REV. 451, 461-62 (1989)Google Scholar.

33 See SENATE REPORT, supra note 32, at 3.

34 Id.

35 See Mintz, supra note 31, at 342. In June 1983, Surgeon General C. Everett Koop stirred congressional interest in regulating organ transplantation by holding a workshop entitled “Solid Organ Procurement for Transplantation: Educating the Physician and the Public.” See Cate, Fred H., Human Organ Transplantation: The Role of Law, 20 J. CORP. L. 69, 76 (1995).Google Scholar

36 See 42 U.S.C. § 273 (1994). For a discussion of legislative amendments expanding the national transplantation system, see Mintz, supra note 31, at 347 n.41.

37 See 42 U.S.C. § 274(a)-(b) (1994).

38 See McDonald, John C., The National Organ Procurement and Transplantation Network, 259 JAMA 725, 726 (1988).CrossRefGoogle Scholar

39 The National Organ Transplant Act of 1984 lists the full duties of the Organ Procurement and Transplantation Network:

1) establish a national list of potential recipients; 2) establish a medical criteria system of organ matching and allocation; 3) adopt and use standards of quality for the acquisition and transportation of donated organs and transport such organs to transplant centers; 4) collect, analyze, and publish data concerning organ donation and transplants and conduct studies for improving the procedures of organ procurement and allocation; 5) actively attempt to increase the supply of donated organs; 6) submit to the Secretary an annual report about the success and costs of transplants.

Mintz, supra note 31, at 344-45 (summarizing 42 U.S.C. § 274(b)(2) (1994)).

40 United Network for Organ Sharing (UNOS) reports that of the approximately 53,000 potential recipients in its database, only 19,410 transplants were performed in 1996. See Division of Transplantation (visited Oct. 4, 1997), <http://www.hrsa.dhhs.gov/bhrd/od/factshee/dotfs.htm>.

41 See 42 U.S.C. § 273(a)(2).

42 See Organ Distribution Policy 3.0, at 3.1.1 (visited Oct. 16, 1998) <http://www.unos.org/cinetpub/wwwroot/about/policy%Fpolicies3.htm> [hereinafter UNOS Policy 3.0].

43 See id. at 3.5.5.4 (showing each region and its constituent states); see also 42 U.S.C. § 273(b)(1)(E).

44 See id. at 3.1.7.

45 See UNOS, Articles of Incorporation (visited Nov. 18, 1998) <http://www.unos.org/cinetpub/wwwroot/about/policy%5Farticles.htm>.

46 See UNOS Statement of Principles and Objectives of Equitable Organ Allocation (visited Nov. 18, 1997) <http://www.unos.org/about/principles.htm> [hereinafter UNOS Statement].

47 See id.; see also Mintz, supra note 31, at 348-49.

48 See UNOS Statement, supra note 46; see also Mintz, supra note 31, at 349.

49 UNOS Statement, supra note 46. For a detailed discussion of the requirements to be on the board of directors, see 63 Fed. Reg. 16,332 (1998) (to be codified at 42 C.F.R. § 121.3(a)); 42 CF.R. § 485.304(f) (1997).

50 See UNOS Statement, supra note 46.

51 See id.

52 See id. (stating that “it is imperative that organ allocation policies be based upon sound principles and objectives to ensure equity and public confidence in the system”).

53 See Weir, Robert F., The Issue of Fairness in the Allocation of Organs, 20 J. CORP. L. 91, 92 (1995)Google Scholar; see also Lawrence W. White & Mary Ellen Waithe, The Ethics of Health Care Rationing as a Strategy of Cost Containment, in ALLOCATING HEALTH CARE RESOURCES 23, 40-41 (James M. Humber & Robert F. Almeder, eds. 1994) (discussing the discrimination that results from health care rationing).

54 See infra Parts IV and V.

55 See Weir, supra note 53, at 96-97. The controversy surrounding Governor Casey of Pennsylvania illustrates the difficulties this approach can cause. His social worth earned him the opportunity to jump immediately to the top of the list to receive both a heart and a liver transplant. See Lisa Belkin, Fairness Debated in Quick Transplant, N.Y. TIMES, June 16, 1993, at A16. “A donor was found for Casey in less than one day, in contrast to an average wait of 67 days for a liver and 198 days for a heart.” White & Waithe, supra note 53, at 42.

56 See generally Weir, supra note 53, at 96 (describing relevant criteria such as effectiveness of treatment).

57 See Field, Martha A., Killing the Handicapped—Before and After Birth, 16 HARV. WOMEN'S L.J. 79, 87 (1993).Google Scholar

58 Peters, supra note 27, at 831.

59 See id.

60 Field, supra note 57, at 88; see also White & Waithe, supra note 53, at 42 (rationing health care “can't eliminate the subtle, indirect, immeasurable influences that occur when you involve human patients, human doctors, and human decison makers”).

61 See Peters, supra note 27, at 834.

62 See Morreim, E. Haavi, Futilitarianism, Exoticare, and Coerced Altruism: The ADA Meets its Limits. 25 SETON HALL L. REV. 883, 897 (1995).Google Scholar

63 See Peters, supra note 27, at 820 (stating that Congress enacted the ADA to eliminate decisions based on stereotypical assumptions).

64 See generally White & Waithe, supra note 53, at 40-43 (stating that randomization is a system where initial selection may be objective, but that social worth criteria eventually come into the selection procedure).

65 See Weir, supra note 53, at 95.

66 See id.

67 See id.

68 See Paul Recer, Transplant Program Criticized, DAYTON DAILY NEWS, Dec. 11, 1996, at 12A; see also Stein, John A., Rethinking the National Organ Transplant Program: When Push Comes to Shove, 11 J. CONTEMP. HEALTH L. & POL'Y 197, 213 (1994).Google Scholar

69 See Stein, supra note 68, at 213.

70 See Sheryl Gay Stolberg, Patients’ Lives on the Line in Battle Over Transplants, N.Y. TIMES, Mar. 25, 1998, at A1. However, debate continues regarding the proposed plan: while one analysis of the proposal found that such a plan would save 200 lives a year, another study, conducted by UNOS, found that the plan “would result in 761 additional repeat transplants each year and that the overall survival rate after transplants would drop to 68% from 75%.” Id.

71 See Weir, supra note 53, at 100.

72 See Developments in the Law—Medical Technology and the Law: Organ Transplantation, 103 HARV. L. REV. 1614, 1630 (1990)Google Scholar [hereinafter Developments in the Law]. It is important to note that this process usually occurs in the UNOS specified regions. See UNOS Policy 3.0, supra note 42, at 3.5.5 (stating that the allocation of cadaveric kidneys progresses locally, then regionally, then nationally). Additionally, the allocation process varies depending on the type of organ. See generally id. (outlining the allocation process for all solid organs).

73 See Developments in the Law, supra note 72, at 1631. Due to more readily available funds and technology, a patient needing a kidney is more likely to find himself on the waiting list than if he needs a heart. See id.

74 See id.

75 See id. at 1632. Some Organ Procurement Organizations require a minimum life expectancy, usually two years, before placing a patient on the UNOS waiting list. See id.

76 Id. This level of evaluation also contemplates a “patient's age, occupation, educational level, household and family structure, financial situation, response to stress … and general level of functioning.” Id. at 1633.

77 See id.

78 UNOS has no unilateral power to enforce the policies it promulgates, therefore, its policies are advisory. See Mintz, supra note 31, at 348.

79 Pub. L. No. 99-509, § 9318(a), 100 Stat. 1874, 2209-10 (1986) (codified at 42 U.S.C. § 1320b-8 (West 1998)). Section 1138 was added by the 1986 Sixth Omnibus Budget Reconciliation Act (SOBRA). Pub. L. No. 99-509, 100 Stat. 1874 (1986).

80 See Ayres, Ian et al., Unequal Racial Access to Kidney Transplantation, 46 VAND. L. REV. 805, 814 (1993).Google Scholar

81 See 42 U.S.C. § 1320b-8(B). The case of Salgado v. Kirschner, 878 P.2d 659 (Ariz. 1994), demonstrated how Medicaid required a state to provide financial coverage for organ transplants. See Banks, Gloria J., Legal & Ethical Safeguards: Protection of Society's Most Vulnerable Participants in a Commercialized Organ Transplantation System, 21 AM. J.L. & MED. 45, 70 n.202 (1995)Google Scholar. In Salgado, a forty-one-year-old patient was denied Medicaid coverage for a kidney transplant due to an Arizona statute that limited such funding to patients under the age of twenty-one. See Salgado, 878 P.2d at 661. The Arizona Supreme Court determined that Arizona's voluntary participation in the federal Medicaid program (for which it received federal funds) required it to cover the costs of transplants to “all patients who can be treated effectively by the same organ transplantation procedure.” Id. at 664.

82 See Developments in the Law, supra note 72, at 1630-31.

83 See id. at 1633; see also supra Part II.B (noting that UNOS members formulated this selection system based on member and public input).

84 UNOS Statement, supra note 46.

85 Id.

86 Id.

87 See id.

88 Id. Economic status and social criteria are not factored into the “medical criteria” outlined by UNOS. See id.

89 See id. UNOS strives to avoid placing too much emphasis on medical criteria or justice by considering both together when promulgating its allocation policies.

90 Developments in the Law, supra note 72, at 1634.

91 See UNOS Statement, supra note 46.

92 See id.

93 See id. UNOS has come under attack by many who believe that it should place less emphasis on allocating organs according to geographic location and more on allocating the scarce organs according to who is the most ill. See Laura Meckler, BATON ROUGE SUNDAY ADVOC, Oct. 4, 1998, available in 1998 WL 4914509. Recently, Donna Shalala, HHS Secretary , stressed that although organ transplantation has reached more people needing the treatment,

[w]e also must do a much better job of meeting the central mandate of the National Organ Transplant Act: to ensure an equitable nationwide system for the distribution of transplantable organs. Under existing policies, where a patient lives and which transplant hospital a patient chooses are often the primary determinants of whether the patient receives an organ. In other words, where you live and where you list can determine whether you live or die.

Medical urgency—how badly a patient needs the transplant and his or her chances of survival—is not always the main factor in deciding who lives and who dies. I believe that the emphasis on geography instead of medical judgment is the reason that patients in one part of the country wait as much as five times longer than patients in other parts of the country who have the same severity of illness. Policies of the Organ Procurement and Transplantation, Network should be based on medical criteria, as developed by the transplant community itself.

Senate Appropriations Subcomm. on Labor, Health and Human Services and Education Organ Transplant Policy, Sept. 10, 1998 (testimony of Donna Shalala, Secretary of HHS), available in 1998 WL 18088339 [hereinafter Shalala Testimony].

94 See Developments in the Law, supra note 72, at 1637.

95 See id. at 1634.

96 See id.

Even though the imminence of death may be considered as the overriding criterion in determining medical need, the likelihood of not receiving another organ because the patient has developed antibodies to a large number of [antigens] and is thus effectively excluded from transplantation with many of the organs that are available might also be considered [an important criterion].

Id. Additionally, what constitutes a successful transplantation is also difficult to define. See id. It has been “suggested that transplant success should be judged by three criteria: length of patient survival, length of graft survival (the amount of time the transplanted organ will function adequately before the patient's body ultimately rejects it), and the patient's post-transplantation quality of life.” Id.

97 See id. at 1635. Due to advancements in immunosuppressive drugs, the point system relating to antigen matching has become less important and more people are able to receive kidneys from nonrelated donors. See Terry Schraeder, New Tack Pays of on Organ Rejection, BOSTON GLOBE, Aug. 17, 1998 (describing the success in transplanting kidneys from nonrelated persons).

98 This Note focuses on kidneys as an example for articulating the allocation process because kidney transplants have the longest history of success and they constitute more than 75% of all organ transplants. See id. at 1616.

99 See supra notes 74-86 and accompanying text (discussing the criteria physicians’ use when placing patients on local, regional and national organ waitlists).

100 See Developments in the Law, supra note 72, at 1630.

101 See id. at 1633.

102 See id. at 1633-34.

103 For a detailed explanation of the specific points awarded to each factor, see infra n. 119.

104 See Organ Policy 3.0, supra note 42, at 3.5.5.1.

105 Id. at 3.5.5.2.

106 See id.

107 See id. at 3.5.5.3.

108 See 42 U.S.C. § 12101(b)(1) (stating the purpose of the ADA is “to provide [a] clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities”).

109 See Orentlicher, supra note 10, at 72, 75 (stating that “while [a standard based on reasonable accommodation and minimal benefit from transplants] offers greater protection against discrimination than existing standards, it does not go far enough to protect against discrimination arising from biases in social structure”).

110 See id.

111 See generally In re Phillip B., 156 Cal. Rptr. 48 (1979) (denying corrective heart surgery for a child with Down's Syndrome); Superintendent of Belchertown State School v. Saikewicz, 370 N.E.2d 417 (Mass. 1977) (denying patient with mental retardation chemotherapy for leukemia).

112 See Orentlicher, supra note 10, at 63.

113 “The term ‘disability’ means, with respect to an individual—(A) a physical or mental impairment that substantially limits one or more of the major life activities of such individual; (B) a record of such an impairment; or (C) being regarded as having such an impairment.” 42 U.S.C. § 12102(2).

114 See Orentlicher, David, Rationing and the Americans with Disabilities Act, 271 JAMA 308, 312 (1994)CrossRefGoogle Scholar.

115 See id.

116 See id.; see also Macurdy, Allan H., The Americans with Disabilities Act: Time for Celebration, or Time for Caution?, 1 B.U. PUB. INT. L.J. 21, 33 (1991)Google Scholar.

117 UNOS's patient waiting list “is the computerized list of patients who are waiting to be matched with specific donor organs in the hopes of receiving transplants. Waiting list patients are registered on the UNOS patient waiting list by UNOS member transplant centers, programs, or OPOs.” UNOS Policy 3.0, supra note 42, at 3.1.4.

118 The UNOS Match System “is the computerized algorithm used to prioritize patients waiting for organs.” Id. at 3.1.5.

119 The point allocation system varies for each organ. Again, kidney allocation illustrates how the process works. UNOS assigns points based on time of waiting (one point for every year on the waiting list and a fraction of a point for the length of time on the list as compared with others), quality of antigen mismatch (more points to those with fewer mismatches with potential donors), panel reactive antibody (four points if the panel reactive antibody is 80% or greater), pediatric kidney transplant candidates (giving children younger than eleven years old four points and those between the ages of eleven and eighteen three additional points) and donation status (four points if she has donated a vital organ or segment of a vital organ in the past). See id. Medical urgency does not qualify for points on the national or regional level, but may, in certain circumstances, on the local level. See id. at 3.5.9. The more points a patient has, the greater the likelihood of receiving a kidney. However, regional availability also factors into whether a person will ultimately receive a kidney. See id. at 3.5.5.

120 See id. at 3.5 (outlining the policy for kidney allocation).

121 See id. at 3.6 (outlining the policy for liver allocation).

122 See id. at 3.7 (outlining the policy for thoracic organ allocation).

123 See id. at 3.8 (outlining the policy for pancreas allocation).

124 See id. at 3.11 (outlining the policy for intestinal organ allocation).

125 See id. at 3.9 (outlining the policy for other organ allocation).

126 See Peters, supra note 27, at 863 (“Congress has given no guidance on how the disability rights laws should apply to cases posing this conflict in fundamental values.”).

127 See Orentlicher, supra note 10, at 66.

128 See Morreim, supra note 62, at 889.

129 See id.

130 In re Baby K, 832 F. Supp. 1022 (E.D. Va. 1993), aff'd 16 F.3d 590 (4th Cir. 1994). Baby K was born with anencephaly, a congenital defect in which large portions of the skull and brain are missing. See Marylou Tousignant & Bill Miller, Death of Baby K Leaves a Legacy of Legal Precedents, WASH. POST, Apr. 7, 1995, at B3. Because the hospital believed that aggressive treatment would serve no therapeutic purpose and that most anencephalic infants die within a few days of birth, they recommended that Baby K only receive supportive care in the form of nutrition, hydration and warmth. See In re Baby K, 16 F.3d 590, 592 (4th Cir. 1994). The child's mother disagreed and insisted that Baby K receive mechanical breathing assistance as needed. See id. at 593. The District Court for the Eastern District of Virginia ruled against the hospital on two grounds. See Morreim, supra note 62, at 884. First, the Emergency Medical Treatment and Active Labor Act (EMTALA) states that when an emergency condition exists, the hospital must stabilize the condition before any transfer to another facility. See id. The hospital was required by law to provide the treatment because EMTALA has no exceptions for futility and the ventilator would stabilize Baby K. See In re Baby K, 832 F. Supp. at 1027. Second, the district court found that the language of the ADA did not permit denying ventilator services to Baby K where the same services would have been provided to a child without a disability. See id. at 1029. The Fourth Circuit decided the case purely on EMTALA grounds. See Morreim, supra note 62, at 884.

131 Morreim, supra note 62, at 900.

132 42 U.S.C. § 12101(a)(8) (1994).

133 See Morreim, supra note 62, at 901. Baby K's father supported the hospital's position by stating “What chance does this child have to live or grow up or have any fun in life? Lying on her back, 365 days a year, that's no life … .” Marylou Tousignant & Bill Miller, Baby K's Mother Gives Her the Prayer That Many Deny She Has, WASH. POST, Oct. 7, 1994, at A1, available in 1994 WL 2443468.

134 See Morreim, supra note 62, at 911. The undue burden argument finds that the costs of some treatments, such as arguably futile care for a wide array of patients, would be staggering. See id. “[E]ven if the costs for a particular kind of care for a particular group of patients are not unbearable for society as a whole, they can be for the small hospital or payer that must actually provide or pay for the care.” Id. n.92. However, addressing the cost concerns, several studies have demonstrated that the cost of exoticare is not really as high as Morreim suggests. In fact, in one study, of the $8.9 million spent on the care of “futile” patients, only about $1 million might have been saved by earlier withdrawal of ventilator care. See Alexander M. Capron, Medical Futility: Strike Two, HASTINGS CENTER REP., Sept.-Oct. 1994, at 42, 43.

135 The fundamental change argument asserts that, overall, there will be less care for everyone in society if health care facilities are required to provide expensive treatments to everyone. See Morreim, supra note 62, at 916-17. For example, Morreim argues that if more of a health maintenance organization's pharmaceutical budget goes toward high-cost life-saving drugs, less of money would remain for more common illnesses like hypertension, arthritis and asthma. See id. at 917.

136 The “harm to others” argument asserts that a reduction in ordinary care results in lower quality care for everyone in society. See id. at 920. “If we presume that routine health care actually does what it is supposed to do—foster health, reduce illness, and ameliorate pain and dysfunction—then a serious reduction in ordinary care will quite surely result in at least some harm to the safety and well-being of a significant number of people.” Id.

137 See id. at 912. Additionally, such expenditures would result in higher health premiums and the coverage of fewer people because employers would be unable to sustain such costs for their employees. See id.

138 See id. at 916-17.

139 “Exoticare” occurs when “virtually any cost for virtually any level of care must be shouldered for virtually any patient who has even the smallest chance of surviving or benefitting [sic], even for a short time.” Id. at 910 (referring to the ongoing endless respirator care provided to Baby K).

140 “Basicare” “aims to prevent or cure illness, ameliorate pain, reverse or minimize dysfunction, and the like. [Basicare] refers to interventions that are genuinely likely to achieve these ends—not to care that is experimental, highly unlikely to benefit, or prohibitively costly relative to benefits.” Id. at 917 n.110.

141 Id. at 917.

142 Id. at 920.

143 See id.

144 Most likely, these procedures would be partially covered by Medicare. In 1987, Medicare funded approximately 8,250 kidney transplants. See Schuck, Peter H., Government Funding for Transplantation, 14 J. HEALTH POL. POL'Y & L. 169, 171 (1989)CrossRefGoogle Scholar. Transplantation operations range in cost from $30,000 to $40,000 for kidneys to well over $85,000 for hearts or $175,000 for livers. See Developments in the Law, supra note 72, at 1628.

145 See Cate, supra note 35, at 69 (citing Roger W. Evans, Executive Summary, THE NATIONAL COOPERATIVE TRANSPLANT STUDY 2, 4 (1991)).

146 See Orentlicher, supra note 10, at 66.

147 See Veatch, Robert M., Research on “Big Ticket” Items: Ethical Implications for Equitable Access, 22 J.L. MED. & ETHICS, 148, 149 (1994)CrossRefGoogle Scholar (arguing that “some expenditures on ‘big ticket,’ apparently expensive procedures may turn out to be just as cost-effective as apparently cheaper and more efficient procedures.”).

148 See generally id. (noting that if the principle of reasonable accomodations were applied to organ transplant programs, those programs could provide support services that would make transplants more feasible for disabled patients).

149 See supra Part III.B (discussing how section 1138 of the Social Security Act brings hospitals under UNOS policies).

150 See supra Part III.B. Secretary Shalala stressed that UNOS policies need revising to meet certain goals, including requiring “that criteria for determining the medical status of patients be standardized, again on the basis of objective criteria.” Shalala Testimony, supra note 93. Bringing UNOS policies in compliance with the ADA would help meet this goal.

151 See Orentlicher, supra note 114.

152 Developments in the Law, supra note 72, at 1637.

153 See Orentlicher, supra note 10, at 83 (noting the need for “an equal protection standard, rather than an entitlement standard, that responds to biases in social structure and that operates at the individual level”).

154 See Gary Delsohn & Tom Philip, Activist Takes on the Fight of Her Life: Transplant Rejected Because of Disability, SACRAMENTO BEE, Aug. 11, 1995, at A1, available in 1995 WL 4133016.

155 Jensen, a high school graduate who worked a steady job busing tables in the California State Capitol cafeteria, also received recognition from President George Bush for her work as president of an advocacy group for people with disabilities. See Cynthia Hubert, Stanford OKs Transplant in Down Syndrome Case, SACRAMENTO BEE, Jan. 18, 1996, at A1.

156 See Developments in the Law, supra note 72, at 1632.

157 See Orentlicher, supra note 10, at 66.

158 See 42 U.S.C. § 12182(b)(2)(A)(ii).

159 See id. § 12111(9)(A)-(B).

160 See id. § 12111(10)(B)(i)-(iii).

161 See Orentlicher, supra note 10, at 66.

162 See 42 U.S.C. § 12111(10)(B)(i)-(iv).

163 See Orentlicher, supra note 10, at 57.

164 See UNOS Statement, supra note 46. Often, rationales described as “medical” are in fact utilitarian in scope and employ social worth comparisons. See White & Waithe, supra note 53, at 37-38. Joel Newman of UNOS has stressed that social worth considerations are “actively avoided in setting allocation policy.” Hammond, Terry, Organ Transplants: Policy Issues of Donation, Allocation Inextricably Intertwined, Experts Say, 5 HEALTH CARE POL'Y RPT. 1112, 1114 (1997)Google Scholar However, UNOS does employ such considerations when it assigns points to people on its waiting lists. See supra note 119.

165 See Orentlicher, supra note 10, at 72 (stating that courts should set the threshold low enough to ensure that it provides meaningful protection for persons with disabilities).

166 See id. at 73.

167 See supra Part III.A.

168 See Hubert, supra note 7.

169 See id.

170 See id. Lymphoma is a common side effect from the drugs used to suppress the immune system in order to keep the body from rejecting the new organs. See id.

171 See id.

172 Id.

173 Id.

174 Id.