Early experiences of independent advocates for potential HIV+ recipients of HIV+ donor organ transplants

Abstract

Background HIV+ to HIV+ solid organ transplants in the United States are now legally permitted. Currently, these transplants must adhere to the HIV Organ Policy Equity (HOPE) Act Safeguards and Research Criteria that require the provision of an independent recipient advocate. Having a designated advocate for recipients is a novel requirement for solid-organ transplant programs. The objective of this study was to understand the experiences of the first advocates serving this role. Methods We conducted 15 semi-structured interviews with HOPE Independent Recipient Advocates (HIRAs). Results. All HIRAs had a professional degree in nursing/allied health, social work, or medicine as well as experience in transplantation or infectious diseases. HIRAs encounters with potential recipients varied in length, modality (phone or in-person), and timing. The newness of the role and the lack of guidance regarding it was associated with unease among some HIRAs. Some HIRAs questioned whether their role was redundant to others involved in transplantation and research, since some potential recipients experienced informational fatigue. Conclusions: HIRAs are providing a check on the voluntariness of potential participants’ decision to be willing to accept an HIV-infected organ. Many interviewees suggested that having guidance regarding qualifications, training, and practice would be helpful and alleviate unease related to their role. However, HIRAs’ concerns about informational fatigue and potential role redundancy raises the question of whether the HIRA requirement may inadvertently be increasing burden for potential recipients. Future work that captures the experiences of potential recipients.

Patients’ Experiences With HIV-positive to HIV-positive Organ Transplantation

“…This finding is consistent with the results of an interview study with HOPE IAs, which found that their role was not clearly defined or understood. 32 These emerging data may challenge prior conceptual scholarship asserting the importance of independent advocates in the protection of HIV D + /R + transplant recipients. 13 , 17 Consequently, additional data would likely be useful in informing future conceptual and policy deliberations regarding IAs in this setting.…”

Development of a Patient Reported Measure of Experimental Transplants with HIV and Ethics in the United States (PROMETHEUS)

“…PROMETHEUS was developed as part of a larger multidisciplinary project aimed at understanding the ethical, legal and social issues associated with HIV D+/R+ transplantation. The larger project includes in-depth interviews with recipients of HIV D+/R+ transplants, potential HIV+ living donors [ 21 ] and independent recipient advocates [ 22 ] as well as a quantitative survey of transplant candidates living with HIV on the organ transplant waitlist regarding their willingness to accept HIV D+/R+ transplants [ 23 ].…”

Economic Considerations in Using HCV and HIV Positive Donors for Kidney Transplant

“…The additional psychosocial strain of deciding between remaining on the waiting list or taking an organ from a higher risk donor increases the difficulty of obtaining informed consent for transplant. The HOPE Act mandates that Independent Recipient Advocates (HIRA) must be involved to navigate these challenging decisions with patients [44]. HIRAs typically have backgrounds in nursing, social work, or medicine.…”

“…Duties as the HIRA are often added on to primary clinical roles. In some instances, an individual HIRA has assisted with over 15 evaluations [44]. Thus far, HIRAs have been independent of the transplant team, and are unpaid volunteers.…”