Issues Involving Public Perception: The Negative Case

1. Issues Involving Public Perception: The Negative Case George J. Agich, Ph.D. F. J. O'Neill Chair in Clinical Bioethics Chairman, Department of Bioethics Joint Appointment, Transplant Center Cleveland Clinic Foundation

2. The Critical Organ Shortage • 5,984 cadaveric organ donors; • 22,953 lifesaving organ transplants* performed in 2000 (17,255 cadaveric donor transplants, 5,653 living donor transplants); • 77,179 on waiting list as of June 3, 2001; and • 5,597 deaths while on Wait List at end of 2000. *Includes multiple organ transplants Sources: UNOS and OPTN

3. Justice Considerations: Cadaveric Organ Allocation • If HIV Transplant Trial removes organs from cadaveric pool: • Opportunity cost = diverting organs to group with uncertain benefit from a group with known benefit • Some deaths of patients on list will directly occur without corresponding evidence of benefit

4. Justice Considerations: Conclusion • HIV Transplant Trial will reduce number of organs available for needy patients who can benefit • Maximization of benefit has been a guiding principle of organ allocation and distribution • THEREFORE: HIV Transplant Trial is not ethically justified

5. Medical News of the Moment Family of Linda Jones, mother of three children ages 2, 4, and 7, active in community service organization died today of complications associated with end-stage renal disease. Her family allege that the patient was denied a life-saving transplant when an available organ was used in an experimental transplant program for patient with AIDS.

6. Local OPO reports that procurement rates have fallen since the story of the young mother was aired. Father of 20 year old woman fatally injured in automobile accident told reporters: “They wanted me to give Jennie’s organs. They said it was a gift of life. But I asked if they’re going to give them to people deserving to live or to those others. The OPO wouldn’t say. So, we said no thanks.”

7. Adverse Publicity • Transplant Centers and Experts line up on opposite sides of the issue. • Dr. I. Cutup, Lead Transplant Surgeon said: “I know what they’re trying to do. I support them in spirit, but the reality is that the last thing we need is more competition for an already tragically scarce resource. I don’t know what they were thinking when they started.”

8. Adverse Publicity • The Local OPO issued the following news release: “While we understand the good intentions of those involved in the Study, the negative reaction of the public to what the media has described as “a waste of life-saving organs” has adversely affected organ donation efforts. We wish the Study had done a better job of educating the public about the transplant needs of AIDS patients. Organ procurement has definitely been hurt.”

9. Adverse Publicity • James Cox, M.D., Transplant Surgeon at Regional Hospital said, “We don’t have to like it, but AIDS does not elicit the same sympathy as other diseases. That’s the reality. The sad fact is that some of my patients will die because they can’t get a life-saving transplant. Its hard to tell patients and families that the organ you waited for for so long was used in an experiment.”

10. Potential Risks • Reduce organ donation rates • Confuse the “gift of life” message • Exacerbate competition for organs among centers • Encourage political demagoguery about organ allocation/distribution • Increase anxiety for patients (and families) waiting for organs

11. Stakeholders • Recipients and their families • Individual transplant programs • Individual transplant centers • Donors and their families • Third-party payers • Public policy makers • Media ***