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

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, a novel requirement for solid organ transplant programs. The objective of this study was to understand the experiences of the first advocates serving in this role. METHODS: We conducted semi-structured interviews with 15 HOPE independent recipient advocates (HIRAs) from 12 institutions. RESULTS: All HIRAs had a professional degree and experience in transplantation or infectious diseases. HIRAs' encounters with potential recipients varied in length, modality, and timing. The newness of the role and the lack of guidance were associated with unease among some HIRAs. Some questioned whether their role was redundant to others involved in transplantation and research since some potential recipients experienced informational fatigue. CONCLUSIONS: HOPE independent recipient advocates are ensuring the voluntariness of potential participants' decision to accept an HIV-infected organ. Many suggested additional guidance would be helpful and alleviate unease. Concerns about potential role redundancy raise the question of whether the HIRA requirement may be inadvertently increasing burden for potential recipients. Future work that captures the experiences of potential recipients is warranted.