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. Author manuscript; available in PMC: 2023 Sep 1.
Published in final edited form as: Am J Transplant. 2022 Apr 25;22(9):2283–2284. doi: 10.1111/ajt.17062

Transplantation, HIV Serostatus, and Registry Data: Room for Improvement

Isabel Campos-Varela 1,2, Jennifer C Price 3, Jennifer L Dodge 4,5, Norah A Terrault 6
PMCID: PMC10266541  NIHMSID: NIHMS1904970  PMID: 35429220

To the Editor:

In the transplant setting, registry data help inform patients and the transplant community about quality and safety. Registries depend on centers reporting candidate and donor information on wait-list, transplant and post-transplant outcomes. Both the Organ Procurement and Transplantation Network (OPTN) database and the European Liver Transplant Registry (ELITA/ELTR) have been used to address transplant-related questions, and they remain outstanding resources to inform clinical care. A major limitation to the registries is the collection of human immunodeficiency virus (HIV) serostatus at transplantation rather than also at time of wait-list registration. This prevents evaluation of important information for persons living with HIV (PLWH) awaiting transplantation, including number of registrations, regional variations in listing and, most critically, wait-list outcomes. In the liver transplantation (LT) setting, this is particularly relevant, as liver disease is a leading cause of death among PLWH. LT wait-list outcomes data in PLWH come from three studies. The first, a 2005 single-center study included 58 wait-listed PLWH and found higher mortality compared to matched HIV-uninfected patients.1 The second, from 2010, included 167 patients enrolled in the HIV-TR study comparing them to HIV-uninfected controls from an OPTN cohort. The wait-list mortality was similar, but a significantly lower proportion of wait-listed PLWH received a LT (34% vs. 47.6%).2 The third linked data from the Scientific Registry of Transplant Recipients to pharmacy fills identifying 581 LT HIV-infected candidates. PLWH had a 43% higher wait-list mortality and a 41% lower rate of LT.3 Whether this higher wait-list mortality and lower access to LT among PLWH persists is unknown.13 Post-LT outcomes for PLWH have improved over time,4,5 and it is possible that wait-list outcomes have similarly improved, especially in hepatitis C-coinfected patients.5 Knowledge of HIV infection status at listing will allow clinicians and policymakers to better assess if disparities in mortality and transplant access exist among PLWH, understand the potential causes of disparities and inform strategies to reduce them. This is relevant to all organ transplant candidates, not just LT candidates. This knowledge will allow estimation of the number of potential candidates to the HIV Organ Policy Equity Act, an option for increasing the donor pool.

The OPTN has processes to enact such changes with appropriate vetting by committees (e.g., Disease Transmission Advisory Committee, Data Advisory Committee) allowing public comments, and ultimately requiring OPTN Board and Office of Management and Budget approval. Notably, completeness of HIV serostatus at the time of transplant has significantly improved over time, with a proportion of HIV serostatus missing of 15.4% in 2008 and 5.3% in 2015.4 As HIV testing is routinely done as part of transplant evaluation, the primary ask here is to include this information as a new data element for wait-listed patients.

This is viewed as a first step to raising awareness and bringing this issue to the forefront. Collecting HIV serostatus at listing is essential to accurately inform PLWH about transplant and will make the registries a more powerful resource for improving the outcomes of PLWH awaiting solid organ transplantation.

ACKNOWLEDGMENTS

Isabel Campos-Varela’s research activity is funded by grant PI19/00330, funded by Instituto de Salud Carlos III and co-funded by European Union (ERDF/ESF) - A way to build Europe. CIBERehd is supported by Instituto de Salud Carlos III. CIBERehd is supported by Instituto de Salud Carlos III. The work was independent of all funding. Jennifer C Price’s research activity is funded by University of California San Francisco Liver Center [P30 DK026743]. Jennifer L. Dodge’s research activity is supported by the University of Southern California Research Center for Liver Disease (P30DK048522). The work was independent of all funding.

Footnotes

DISCLOSURE

The authors of thismanuscript have conflicts of interest to disclose as described by the American Journal of Transplantation. NA: Institutional grant support from Gilead Sciences, GSK, and Roche/Genetech. JCP: Research support from Gilead, Merck; Consulting for Theratechnologies; Ownership interest (spouse) in AbbVie, Bristol-Myers Squibb, Johnson and Johnson, Merck. The other authors have no conflicts of interest to disclose.

REFERENCES

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