Transplant advocacy in the era of the human immunodeficiency virus organ policy equity act.

In 2013, the Human Immunodeficiency Virus Organ Policy Equity (HOPE) Act was passed to permit the conduct of research on the transplantation of organs from donors infected with human immunodeficiency virus (HIV) into recipients who are HIV-positive. The HOPE Act workshop had many objectives including the discussion of the ethical issues involved in HIV-positive to HIV-positive transplantation, the informed consent process, and the role of independent advocates in the context of HIV to HIV transplantation. As of 2018, 22 transplant hospitals are approved, or undergoing approval, to perform HIV-positive to HIV-positive transplant surgeries, and this number is expected to grow. This study aims to: (i) briefly review the history and research of HIV+ transplantation prior to the HOPE Act, (ii) describe the ethical principles supporting the HOPE Act, (iii) characterize the informed consent process, and (iv) provide guidance regarding the role of independent advocates in the context of HIV-positive to HIV-positive transplantation.

The development of practice guidelines for independent living donor advocates.

The practice recommendations discussed here are based on the findings of the national survey as well as the opinions of the authors. The recommendations that are proposed here are not exhaustive and are aspirational in intent and are likely to evolve with time. Practice guidelines are recommended for legal and regulatory issues (e.g., state or federal laws), consumer or public benefit (e.g., improving service delivery, avoiding harm to the patient, decreasing disparities in underserved or vulnerable populations), and for professional guidance (e.g., new role, professional risk management issues, advances in practice). Without such practice guidelines, donors, and indirectly the candidates, may be at increased risk for possible bias or undue harm.