Willingness to Accept HIV-infected and Increased Infectious Risk Donor Organs among Transplant Candidates Living with HIV

Abstract

Background:

HIV-infected (HIV+) donor to HIV+ recipient (HIV D+/R+) transplantation might improve access to transplantation for people living with HIV (PLWH). However, it remains unknown if transplant candidates living with HIV will accept the currently unknown risks of HIV D+/R+ transplantation.

Methods:

We surveyed transplant candidates living with HIV from nine U.S. transplant centers regarding willingness to accept HIV+ donor organs.

Results:

Among 116 participants, the median age was 55, 68% were male, and 78% were African American. Most were willing to accept HIV+ living donor organs (87%), HIV+ deceased donors (84%), and increased infectious risk donors (70%). Some (30%) were concerned about HIV superinfection; even among these respondents, 71% were willing to accept an HIV D+ organ.

Respondents from centers that had already performed a transplant under an HIV D+/R+ transplantation research protocol were more willing to accept HIV+ deceased donor organs (89% vs. 71%, p=0.04). Respondents who chose not to enroll in an HIV D+/R+ transplantation research protocol were less likely to believe that HIV D+/R+ transplantation was safe (45% vs. 77%, p=0.02), and that HIV D+ organs would work similarly to HIV D- organs (55% vs. 77%, p=0.04), but more likely to believe they would receive an infection other than HIV from an HIV D+ organ (64% vs. 13%, p<0.01).

Conclusion:

Willingness to accept HIV D+ organs among transplant candidates living with HIV does not appear be a major barrier to HIV D+/R+ transplantation and may increase with growing HIV D+/R+ transplantation experience.

INTRODUCTION

Under the HIV Organ Policy Equity (HOPE) Act, transplantation of HIV+ organs into recipients with HIV (HIV R+) is permitted in the US under research protocols.^1,2 While this donor pool expansion could mitigate the decreased access to transplantation and increased waitlist mortality faced by people living with HIV (PLWH),^1–6 such achievements depend upon whether transplant candidates with HIV are willing to accept HIV+ donor (HIV D+) organs given the unknown risks.^7–10

There is wide variability in transplant candidate willingness to accept increased risk donor (IRD) organs from donors with risk factors for HIV and hepatitis.^11–13 IRD transplants have a very low risk of infection transmission (<1 in 1,000 for HCV¹⁴ and <1 in 10,000 for HIV¹⁵) and a reduced or similar risk of mortality and graft failure as non-IRD organs.^16–18 Despite this, many candidates believe IRD organs are inferior (24%),¹¹ and would only accept them under certain conditions.^11–13

The attitudes of transplant candidates living with HIV towards IRD and HIV D+ organs are unknown. In a survey of 114 US transplant programs, only 50% believed that more than half of their transplant candidates with HIV would accept an HIV D+ organ, and 17% believed that none of their transplant candidates with HIV would be willing.¹⁹ In contrast, community-based studies of PLWH have found broad support of HIV D+/R+ transplantation.^19–22 Whether this holds for transplant candidates with HIV who are faced with the actual decision to accept an HIV D+ organ is unknown.

This multicenter study sought to assess willingness to accept HIV D+ organs and perceptions about the risks and benefits of HIV D+/R+ transplantation among transplant candidates with HIV.

METHODS

Study population

All PLWH evaluated for any solid organ transplant was eligible. Participating centers (n=9) represented five of the eleven Organ Procurement and Transplantation Network regions and included Drexel University, Johns Hopkins University, Ochsner Clinic Foundation, University of Alabama at Birmingham, University of California San Diego, University of California San Francisco, University of Minnesota, University of Pittsburgh, and Yale University.

Survey design

A survey assessing attitudes and beliefs through yes/no questions and Likert-type scales was developed with input from transplant surgeons, infectious disease physicians, and an ethicist. A draft instrument was pilot tested and underwent cognitive testing (n=2).²³ A revised version was pilot tested (n=15) and refined. The refined instrument was fielded (n=30), after which some items were removed to minimize burden and others edited for clarity. [see word document, Supplemental Digital Content 1, containing the survey instrument]

Ethics approval

The survey was approved by the Institutional Review Boards (IRBs) at Johns Hopkins (JH) (IRB00056369), Drexel University (1906007231), University of California San Diego (190391X), University of Minnesota (STUDY00003323), and Yale University (2000024184). IRBs at the other sites did not require local review.

Survey administration

Participants provided written or oral consent. Surveys were distributed from 06/2017 to 09/2019 by phone or in-person, lasting approximately 15 minutes. Participants received a $25 gift card.

Statistical analysis

Five-scale Likert-type questions (“definitely yes,” “probably yes,” “not sure,” “probably not,” and “definitely no”) were collapsed into three categories (“yes,” “no,” and “not sure”) for analyses. Associations were assessed using Chi-squared, Wilcoxon-signed-rank and Fisher’s exact (cell value ≤5) tests. A p-value of ≤0.05 was considered significant. Analyses were performed using Stata/SE, version 15 (StataCorp). To assess associations between center experience and beliefs, we compared respondents from centers that had performed 0 vs ≥1 HOPE transplant (HIV+ or HIV false-positive donor organ transplant) at the time of survey.

RESULTS

Study population

Of 179 eligible candidates, 132 were successfully contacted (47 candidates were not able to be reached by phone), and 116 (88%) responded. All centers had an active HOPE protocol; five had performed ≥1 HOPE transplant.²⁴ 71% of respondents were from centers who had performed a HOPE transplant; 49% were from JH. 57% had been approached to participate in an HIV D+/R+ transplantation protocol; 83% of them had consented, such that 46% of respondents were in an HIV D+/R+ transplantation protocol.

Respondents had a mean age of 55 years and were predominately male (68%) and African American (78%). 76% were waiting for a kidney, 13% liver, 5% kidney and liver and 4% other. 34% were evaluated within the past year [see word document, Supplemental Digital Content 2, demographic characteristics].

Willingness to accept HIV+ and IRD organs

Most participants were willing to accept an organ from an HIV+ deceased donor (DD; 84%) and HIV+ living donor (LD; 87%), or IRD (70%) (Figure 1). Participants were more willing to accept HIV+DD and LD than IRD organs (80% vs 70%, p<0.01). Several factors were associated with willingness to accept HIV D+ organs (Table 1).

Figure 1.

Willingness to Accept and Beliefs about HIV D+/R+ and IRD transplantation (%)

Table 1.

Factors associated with willingness to accept HIV D+ and IRD organs

Beliefs about HIV D+ donation/organs	N (%) with belief	N (%) with belief willing to accept HIV D+a	N (%) without belief willing to accept HIV D+a	p
HIV D+/R+ transplantation safe for recipient	80 (69%)	69 (86%)	4 (44%)	0.01
HIV D+ organs would work similarly to HIV D- organs	76 (66%)	82 (80%)	4 (100%)	0.5
Would receive HIV D+ organ faster	102 (88%)	82 (82%)	4 (80%)	0.2
Accepting HIV D+ organ would help others on wait list	100 (86%)	37 (90%)	2 (100%)	0.4
Would get superinfection from HIV D+ organ	34 (30%)	24 (71%)	36 (90%)	0.1
Would get other infection from HIV D+ organ	23 (20%)	15 (65%)	43 (92%)	0.02
HIV+ LD would be harmed by donationb	18 (16%)	13 (72%)	60 (94%)	<0.01
Beliefs about IRD donation/organs	N (%) with belief	N (%) with belief willing to accept IRDc	N (%) without belief willing to accept IRDc	p
IRD organs would work as well as non-IRD organs	77 (66%)	61 (80%)	1 (13%)	<0.01
Would receive IRD organ faster	95 (82%)	73 (78%)	0 (0%)	<0.01
Accepting IRD organ would shorten wait list	95 (84%)	72 (77%)	1 (17%)	<0.01
Accepting IRD organ would help others on wait list	96 (84%)	68 (72%)	6 (67%)	0.2
Would get infection from IRD organ	32 (28%)	15 (47%)	42 (91%)	<0.01

^aPercent (N) who were willing to accept HIV+ DD and LD reported

^bPercent (N) willing to accept HIV+ LD reported

^cPercent (N) who were willing to accept IRD organs reported

Twenty-four respondents (21%) had identified a possible LD; two indicated this person was HIV+. 16% believed an HIV+ LD would be harmed by donating and were less willing to accept HIV+ LD organs (p<0.01, Table 1).

Nearly all participants (99%) believed that PLWH should have the choice to donate organs. 96% believed that HIV D+/R+ transplantation should be studied in research. 70% believed that allowing HIV+ LD would reduce discrimination against PLWH (Figure 1).

Of participants, 66% believed an IRD organ would work as well as a non-IRD organ; those with this belief were more willing to accept an IRD organ (80% vs 13%, p<0.01). Several factors were associated with willingness to accept IRD organs (Table 1).

Awareness of HIV D+/R+ and IRD transplantation

A majority reported that someone on the transplant team had spoken with them about HIV D+/R+ (80%) and IRD (72%) transplantation prior to the survey, respectively. Having discussed IRD transplantation was associated with willingness to accept IRD organs (p=0.02), but having discussed HIV D+/R+ transplantation was not associated with willingness to accept HIV+ DD (p=0.06) or LD (p=0.2) organs. Those who reported discussing HIV D+/R+ transplantation with their transplant team were more likely to believe HIV D+ organs were safe (72% vs. 57%, p<0.01).

Relationship between center’s HOPE experience and beliefs

Of 82 respondents from centers that had performed ≥1 HOPE transplant, 89% reported willingness to accept HIV+ DD organs vs. 71% from centers that had not (p=0.04). Willingness to accept IRD organs was not different at centers with and without HOPE experience (70% vs. 68%, p=0.6).

No other significant differences in willingness to accept or beliefs about transplantation were found according to center experience. Likewise, no significant differences in willingness or beliefs about HIV D+ or IRD organs were observed between participants from JH vs other centers. [see word document, Supplemental Digital Content 3, containing table on center experience and participant beliefs]

Relationship between enrollment in an HIV D+/R+ transplantation research protocol and beliefs

Among candidates who had been approached about participating in an HIV D+/R+ transplantation protocol, those who chose not to enroll were less likely to believe that HIV D+/R+ transplantation was safe (45% vs. 77%, p=0.02), were less confident that HIV D+ organs would work as well as HIV D- organs (55% vs. 77%, p=0.04), and were more likely to believe they would receive an infection other than HIV from an HIV D+ organ (64% vs. 13%, p<0.01). Concern about HIV superinfection was similar irrespective of enrollment (p=0.2), as were beliefs that accepting an HIV+ D+ organ would help them get an organ faster (p=0.6) and help others on the waitlist (p=1.0).

DISCUSSION

In this multicenter survey of 116 transplant candidates with HIV, 84% were willing to accept HIV+ DD organs, 87% were willing to accept HIV+ LD organs, and 80% were willing to accept both. Most (80%) had discussed HIV D+/R+ transplantation with their team prior to the survey. Although some candidates had concerns about HIV superinfection²⁵ (30%) and inferior organ function (16%), most remained willing to accept an HIV D+ organ.

These results are consistent with studies showing high support for HIV D+/R+ transplantation among PLWH.^19–22 In a survey of 1,010 PLWH in Taiwan, 72% were willing to be donors;²¹ and in a single-center survey of 114 PLWH in the US, 80% were willing to be DDs and 62% LDs.²² In a qualitative study with twenty PLWH in the US, those willing to be LDs were motivated by a sense of solidarity with recipients with HIV and a desire to overcome stigma.²² Furthermore, in a survey of 206 PLWH in the United Kingdom, 55% were willing to accept HIV D+ organs. However, none of these studies included actual transplant candidates.

Our results may inform transplant providers who believe that many of their transplant candidates with HIV would be unwilling to accept HIV D+ organs.¹⁹ This is important because programs that report few patients would be willing to accept HIV D+ organs are less likely to be planning HIV D+/R+ transplantation protocols.²⁰

This survey revealed differences in attitudes towards HIV D+ organs and IRD organs. Specifically, there was greater willingness to accept HIV D+ vs IRD organs (80% vs. 70%, p<0.01); and 12% were unwilling to accept an IRD organ vs. only 4% an HIV D+ organ. This is consistent with other studies, in which unwillingness to accept IRD organs ranged from 24%–47% of participants.^11–13 However, the distinction between IRD and HIV D+ organs is remarkable. This difference was not explained by beliefs about organ function. Perhaps respondents were concerned about acquiring another infection from an IRD vs HIV D+ donor organ (28% vs. 20%), though this survey did not assess which infections concerned respondents. The relatively low willingness to accept IRD organs compared to HIV+ donor organs suggests that even among transplant candidates with HIV, there is stigma associated with the IRD label.

Higher willingness to accept HIV D+ organs was reported by candidates at centers with HOPE experience (89% vs. 71%, p=0.04). Perhaps there was greater provider confidence or comfort with HIV D+/R+ transplantation at experienced centers. In addition, positive media coverage surrounding HOPE transplants has increased over time.^26–28 Thus, support of HIV D+/R+ transplantation may grow further as more transplants are performed.

Our findings have limitations. First, all centers, regardless of whether they had performed a HOPE transplant, had active HOPE protocols at the time of survey. Thus, these findings may not generalize to transplant candidates with HIV at centers without HIV D+/R+ transplantation research protocols. However, all transplant candidates with HIV at each center were contacted, regardless of whether they had enrolled in a HIV D+/R+ transplantation research protocol; indeed, only 46% reported being in a HOPE study at the time of the survey, and 20% reported that no one had spoken to them about HIV D+/R+ transplantation. Furthermore, having spoken to the transplant team about HIV D+/R+ transplantation was not associated with increased willingness to accept these organs. Additionally, though the results were stratified by HOPE transplant experience at each center, participants were not asked whether they were aware of their center’s HOPE transplant experience. Because HIV+ to HIV+ transplantation is currently a novel practice limited to research settings, we believe that reporting on the attitudes of transplant candidates at these centers performing HOPE transplants is useful, especially for centers concerned about candidate willingness to accept HIV D+ organs.¹⁹ Nevertheless, willingness to accept HIV D+ organs and perceptions about HIV D+/R+ transplantation should be assessed at centers without HIV D+/R+ transplantation research protocols. Most respondents (96%) were waiting for kidney and/or liver transplants; therefore, the results of this study not be representative of other organs. The survey also did not assess quality of life, which may influence willingness to accept organs. Finally, we did not validate participants’ responses regarding waitlist status and HOPE enrollment.

In conclusion, transplant candidates living with HIV at centers with active HOPE research protocols across the United States expressed high willingness to accept HIV D+ organs despite acknowledging potential risks, suggesting that patient attitudes are unlikely to be a major barrier to implementation of HIV D+/R+ transplantation. Patient education should specifically address the risk of superinfection,²⁹ as this was a concern of many respondents in this survey. Finally, other potential barriers, such as stigma or education, should be further explored to optimize the implementation of HIV D+/R+ transplantation.

Supplementary Material

Supplemental Digital Content

SUPPLEMENTAL DIGITAL CONTENT

Appendix1.docx

Appendix2.docx

Appendix3.docx

Abbreviations:

DD

Deceased donor

HIV+

HIV-infected

HIV D+/R+

HIV+ donor to HIV+ recipient

HOPE transplant

HIV+ or HIV false positive donor to HIV+ recipient transplant

HOPE Act

HIV Organ Policy Equity Act

IRD

Increased infectious risk donor

LD

Living donor

PLWH

People living with HIV