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Organ Transplantation for Individuals with Neurodevelopmental Disorders

Sandra Jensen’s Legacy

Published online by Cambridge University Press:  09 March 2016

KIM J. OVERBY  and
JOSEPH J. FINS
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Abstract:

In 1996, Sandra Jensen became the first person with Down syndrome to receive a heart-lung transplant. Although it took place almost 20 years ago, her experience continues to shed light on contemporary challenges that individuals with neurodevelopmental disorders face in securing access to transplantation. While overt discrimination has decreased, barriers persist in physician referrals, center-specific decisionmaking regarding wait-listing, and the provision of accommodations for optimizing the assessment and medical management of these individuals. These issues arise from the persistent biases and assumptions of individuals as well as those of a healthcare system that is inadequately positioned to optimally serve the medical needs of the growing number of individuals with functional impairments. More data and greater transparency are needed to understand the nature and extent of ongoing access problems; however, long-term solutions will require changes at the healthcare professional, regional transplant center, and national levels.

Keywords

neurodevelopmental disordersintellectual disabilityorgan transplantationmedical ethicshistory of medicinedisability rights
Type
Departments and Columns
Information
Cambridge Quarterly of Healthcare Ethics , Volume 25 , Issue 2 , April 2016 , pp. 272 - 281
Copyright
Copyright © Cambridge University Press 2016 

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References

Notes

1. Wildermuth J. Transplant for woman with Down syndrome/heart-lung surgery called a landmark. San Francisco Chronicle 1996 Jan 24; available at http://www.sfgate.com/news/article/PAGE-ONE-Transplant-For-Woman-With-Down-2996829.php (last accessed 10 Dec 2013).

2. Greenwood, RD, Nadas, AS. The clinical course of cardiac disease in Down syndrome. Pediatrics 1972;58(6):893–7.Google Scholar

3. Fremon C. “. . . we do not feel that patients with Down syndrome are appropriate candidates for heart-lung transplantation”: These words were a death sentence for Sandra Jensen. And that, she decided, just wasn’t going to happen. Los Angeles Times 1996 Apr 14; available at http://articles.latimes.com/1996-04-14/magazine/tm-58423_1_sandra-jensen/6 (last accessed 31 Mar 2014).

4. Rosen M. By the numbers. People Weekly 1995 Oct 16;44:67(2); available at http://goose.ycp.edu/∼dweiss/phl221_intro/by_the_numbers.htm (last accessed 10 Dec 2013).

5. See note 3, Fremon 1996, at 2.

6. See note 3, Fremon 1996, at 2.

7. The Rehabilitation Act of 1973, Section 504 (29 U.S. Code § 794); available at http://www.epa.gov/civilrights/sec504.htm (last accessed 31 Mar 2014).

8. The Americans with Disability Act of 1990 (ADA) as currently amended. 42 U.S.C.A. § 12101, 12102, 12132; 2 U.S.C.A. § 1311; available at http://www.ada.gov/pubs/ada.htm (last accessed 31 Mar 2014).

9. Orentlicher, D. Psychosocial assessment of organ transplant candidates and the Americans with Disabilities Act. General Hospital Psychiatry 1996;18:5S–12S.CrossRefGoogle ScholarPubMed

10. Whitehead, AT. Rejecting organs: The organ allocation process and the Americans with Disabilities Act. American Journal of Law and Medicine 1998;24(4):481–97.Google ScholarPubMed

11. See note 9, Orentlicher 1996.

12. Orentlicher, D. Destructuring disability: Rationing of health care and unfair discrimination against the sick. Harvard Civil Rights-Civil Liberties Law Review 1996;31:49–87.Google ScholarPubMed

13. See note 10, Whitehead 1998.

14. Richards, D. The defibrillation of NOTA: How establishing federal regulation of waitlist eligibility may save organ transplant patient with disabilities from flat-lining. Southern California Law Review 2013;87:151–94.Google Scholar

15. Hubert C. Hospital could release transplant pioneer today. Sacramento Bee 1996 Feb 27; available at http://www.sacbee.com/2006/08/22/7178/search-the-bees-online-archives.html (last accessed 13 Aug 2014).

16. OPTN/UNOS. Report of the OPTN/UNOS Ethics Committee to the Board of Directors; 2007 June 26; available at http://optn.transplant.hrsa.gov/CommitteeReports/board_main_EthicsCommittee_9_4_2007_13_1.pdf (last accessed 26 Nov 2013).

17. Kasiske, BL, Cangro, CB, Hariharan, S, Hricik, DE, Kerman, RH, Roth, D, et al. [for the American Society of Transplantation]. The evaluation of renal transplant candidates: Clinical practice guidelines. American Journal of Transplantation 2001;2(1 Suppl):5–95.CrossRefGoogle Scholar

18. Orens, JB, Estenne, M, Arcasoy, S, Conte, JV, Corris, P, Egan, JJ, et al. International guidelines for the selection of lung transplant candidates: 2006 update—a consensus report from the Pulmonary Scientific Counsel of the International Society for Heart and Lung Transplantation. Journal of Heart and Lung Transplantation 2006;25(7):745–55.CrossRefGoogle Scholar

19. Murray, KF, Carithers, RL. American Association for the Study of Liver Diseases (AASLD) practice guidelines: Evaluation of the patient for liver transplantation. Hepatology 2005;41(6):1–26.CrossRefGoogle Scholar

20. Mehra, MR, Kobashigawa, J, Starling, R, Russell, S, Uber, PA, Parameshwar, J, et al. Listing criteria for heart transplantation: International Society for Heart and Lung Transplantation guidelines for the care of cardiac transplant candidates—2006. Journal of Heart and Lung Transplantation 2006;25:1024–42.CrossRefGoogle Scholar

21. Martens, MA, Reiss, S. Organ transplantation, organ donation, and mental retardation. Pediatric Transplantation 2006;10:658–64.CrossRefGoogle Scholar

22. Ohta, T, Motoyama, O, Takahashi, K, Hattori, M, Shishido, S, Wada, N, et al. Kidney transplantation in pediatric recipients with mental retardation: Clinical results of a multicenter experience in Japan. American Journal of Kidney Diseases 2006;47(3):A518–27.CrossRefGoogle ScholarPubMed

23. Galante, NZ, Dib, GA, Medina-Pestana, JO. Severe intellectual disability does not preclude renal transplantation. Nephrology Dialysis Transplantation 2010;25:2753–7.CrossRefGoogle Scholar

24. Samelson-Jones, E, Mancini, DM, Shapiro, PA. Cardiac transplantation in adult patients with mental retardation: Do outcomes support consensus guidelines? Psychosomatics 2012:53:133–8.CrossRefGoogle ScholarPubMed

25. Kappel B. Lives worth saving: Organ transplantation and people with disabilities. Minnesota Governor’s Council on Developmental Disabilities. [Summary data from 2004 National Working Group on Disability and Transplantation—Individual and Family Disability Survey.] Available at http://mn.gov/mnddc/news/newsitems/transplant.html (last accessed 23 June 2014).

26. Madison P. Mom claims in viral blog that disabled child denied transplant. CNN Health 2012 Jan 18; available at http://www.cnn.com/2012/01/18/health/organ-transplant-child/ (last accessed 13 Aug 2014).

27. Burling S. Medical debate: Should autism block a man from getting a heart transplant? Philadelphia Inquirer 2012 Aug 15; available at http://articles.philly.com/2012-08-15/news/33201606_1_susan-brozena-transplant-evaluation-heart-transplant (last accessed 13 Aug 2014).

28. See note 14, Richards 2013.

29. California Health and Safety Code 7151.35(b) (West Supp 2013); available at http://www.leginfo.ca.gov/cgi-bin/displaycode?section=hsc&group=07001-08000&file=7150-7151.40 (last accessed 13 Aug 2014).

30. New Jersey Legislature. 2012–13 session. Bill # S1456, prohibits discrimination against potential organ transplant recipient on basis of mental or physical disability; available at http://www.njleg.state.nj.us/bills/BillView.asp ; overview of legislation available at https://www.govtrack.us/states/nj/bills/2012-2013/s1456 (last accessed 13 Aug 2014).

31. Paul’s law HB 1474. Pennsylvania State Legislature. Introduced by Representative Sabatina. Available at http://www.legis.state.pa.us/cfdocs/billInfo/billInfo.cfm?sYear=2013&sInd=0&body=H&type=B&bn=1474 (last accessed 23 June 2014).

32. See note 21, Martens, Reiss 2006.

33. See note 14, Richards 2013.

34. Ne’eman A, Kapp S, Narby C. Organ Transplantation and People with I/DD: A Review of Research, Policy, and Next Steps; Policy Brief for the Autistic Self Advocacy Network (ASAN); 2013; available at http://autisticadvocacy.org/wp-content/uploads/2013/03/ASAN-Organ-Transplantation-Policy-Brief_3.18.13.pdf (last accessed 13 Aug 2014).

35. See note 16, OPTN/UNOS 2007.

36. See note 14, Richards 2013.

37. OPTN/UNOS Ethics Committee General Considerations in Assessment for Transplant Candidacy; available at http://optn.transplant.hrsa.gov/resources/bioethics.asp?index=5 (last accessed 13 Aug 2014).

38. Richards, CT, Crawley La Vera, M, Magns, D. Use of neurodevelopmental delay in pediatric solid organ transplant listing decisions: Inconsistencies in standards across major pediatric transplant centers. Pediatric Transplantation 2009;13:843–50.CrossRefGoogle ScholarPubMed

39. Levenson, JL, Olbrisch, ME. Psychosocial evaluation of organ transplant candidates: A comparative survey of process, criteria, and outcomes in heart, liver, and kidney transplantation. Psychosomatics 1993;34:314–23.CrossRefGoogle Scholar

40. Panocchia, N, Bossola, M, Vivanti, G. Transplantation and mental retardation: What is the meaning of a discrimination? American Journal of Transplantation 2010;10:727–30.CrossRefGoogle ScholarPubMed

41. See note 21, Martens, Reiss 2006.

42. See note 22, Ohta et al. 2006.

43. See note 23, Galante et al. 2010.

44. See note 24, Samelson-Jones et al. 2012.

45. Asch, A. Distracted by disability. Cambridge Quarterly of Healthcare Ethics 1998;7:77–87.CrossRefGoogle ScholarPubMed

46. Shakespeare, T, Iezzoni, LI, Groce, NE. Disability and the training of health professionals. Lancet 2009;374:1815–16.CrossRefGoogle ScholarPubMed

47. National Council on Disability. Current State of Health Care for People with Disabilities; 2009 Sept 30; available at http://www.ncd.gov/publications/2009/Sept302009#exesum (last accessed 13 Aug 2014).

48. See note 10, Whitehead 1998.

49. See note 12, Orentlicher 1996.

50. See note 14, Richards 2013.

51. See note 47, National Council on Disability 2009.

52. Iezzoni, LI. Eliminating health and health care disabilities among the growing population of people with disabilities. Health Affairs 2011;30:1947–54.CrossRefGoogle ScholarPubMed

53. Lagu, T, Iezzoni, LI, Lindenauer, PK. The axes of access—improving care for patients with disabilities. New England Journal of Medicine 2014;370:1847–51.CrossRefGoogle ScholarPubMed

54. Lagu, R, Hannon, NS, Rothberg, MB, Wells, AS, Green, KL, Windom, MO, et al. Access to subspecialty care for patients with mobility impairment. Annals of Internal Medicine 2013;158:441–6.CrossRefGoogle ScholarPubMed

55. Noll, S, Trent, JW, eds. Mental Retardation in America: A Historical Reader. New York: New York University Press; 2004.Google Scholar

56. See note 14, Richards 2013.

57. See note 34, Ne’eman et al. 2013.

58. Grosse, SD, Lollar, DJ, Campbell, VA, Chamie, M. Disability and disability-adjusted life years: Not the same. Public Health Reports 2009;124:197–202.CrossRefGoogle Scholar

59. Bickenbach, J. Ethics, disability and the international classification of functioning, disability and health. American Journal of Physical Medicine and Rehabilitation 2012;91(Suppl):S163–7.CrossRefGoogle ScholarPubMed

60. World Health Organization. International Classification of Functioning, Disability and Health (ICF); available at http://www.who.int/classifications/icf/en (last accessed 13 Aug 2014).

61. Disabled activist Jensen dies 16 months after transplant. Stanford Report 1997 June 4; available at http://news.stanford.edu/news/1997/june4/jensen.html (last accessed 13 Aug 2014).