Engagement in care among newly diagnosed HIV-positive gay, bisexual and other men who have sex with men in the United States: Results from the Together 5,000 study

Abstract

One-quarter of gay, bisexual, and other men who have sex with men (GBMSM) with diagnosed HIV are not engaged in HIV care. Between 2018 and 2019, 50 GBMSM completed qualitative interviews 3 months after receiving an HIV-positive result. Interviews explored barriers to and facilitators of engagement and retention in HIV testing and care. Thematic analysis revealed five major themes: (1) reason for HIV testing (e.g., self-testing), (2) linkage to care (e.g., appointment/logistic issues and social support as encouragement), (3) barriers to engagement in care (e.g., financial burden, competing priorities, and fear/stigma), (4) facilitators of engagement (e.g., financial assistance, patient-provider relationships, auxiliary support services, and health agency), and (5) PrEP as a missed prevention opportunity. Addressing individual-, social-, and policy-level barriers could improve GBMSM’s engagement in HIV care. Further, capitalizing on GBMSM’s health agency through partnerships with local agencies and fostering better patient-provider relationships could optimize HIV care continuity.

INTRODUCTION

HIV continues to be a pervasive public health issue in the United States (U.S.). Gay, bisexual and other men who have sex with men (GBMSM) accounted for over two-thirds (24,084, 65.4%) of all new HIV diagnoses in 2019, thus warranting continued efforts for prevention and intervention (Centers for Disease Control and Prevention, 2021). Successful and prolonged engagement in HIV care, including antiretroviral therapy (ART), not only reduces forward HIV transmission and leads to improvements in morbidity and mortality for HIV/AIDS-related illnesses, but also improves overall health and quality of life (Robertson et al., 2015; Sabin et al., 2017). The HIV care continuum can be effective tools for monitoring the progress of HIV prevention and intervention strategies but there are large gaps in the HIV care continuum for GBMSM (2021). According to the CDC’s 2021 HIV Surveillance Supplemental Report, 78% of GBMSM with diagnosed HIV were linked-to-care, 59% were retained in care, and 68% had a suppressed viral load (Centers for Disease Control and Prevention, 2021). Although some studies have reported racial and ethnic disparities in HIV diagnosis and treatment outcomes (Hightow-Weidman et al., 2017; Taylor et al., 2018), there is evidence of high rates of engagement and retention, and viral suppression among GBMSM of color (Chandler et al., 2019). Therefore, additional exploration of the multi-level determinants of engagement in HIV Care through a socio-ecological approach is needed.

Existing research suggests that medical mistrust, stigma, and discrimination due to sexual orientation act as barriers to engagement in care (Eaton et al., 2015; Gelaude et al., 2017; Liu et al., 2016). While these factors impede the adequate formation of a positive patient-provider relationship, which is pivotal for optimal engagement and retention in care, little is known about the factors that could facilitate prolonged engagement, especially among disenfranchised communities (Gelaude et al., 2017; Genberg et al., 2016). Moreover, there are limited qualitative findings regarding where and why fallouts occur for individuals in resource-limited geographic settings. GBMSM of color represent a particularly vulnerable population, warranting special attention due to increasing HIV prevalence rates and their susceptibility for fallouts in care

This qualitative study used in-depth interviews to explore how a sample of 50 recently HIV-diagnosed GBMSM from across the US were linked to care, paying particular attention to the challenges participants faced regarding their linkage and initiation of ART. The goal of this study was to identify barriers and facilitators to timely linkage and engagement in care, as well as missed opportunities for HIV prevention and intervention.

METHODS

Recruitment

This study used data collected as part of the Together 5000 study, a national, internet-based cohort study of cisgender men, transmen, and transwomen who have sex with men in the US. Participants were recruited using geospatial sexual networking smartphone applications from 2017 to 2018. Participants were eligible for the parent study if they identified as cisgender men, transmen, or transwomen; were between the ages of 16 and 49; had at least 2 male sexual partners in the last 3 months; were not currently participating in an HIV vaccine or PrEP clinical trial; were not on PrEP at the time of enrollment; lived in the US or its territories; and self-reported their HIV status as HIV-negative or unknown. A full description of the recruitment methods of the parent study cohort have been previously published (Grov et al., 2019; Nash et al., 2019).

Participants were mailed an OraSure HIV-1 specimen collection device for self-testing. After completing the oral swab, participants were instructed to mail the specimen using a prepaid shipping envelope addressed to the New York State Department of Health (Avioq HIV-1 Microelisa System). We successfully delivered 6,150 HIV test kits to participants; 5,065 were returned to the lab, and 195 were identified as preliminary positives. HIV-negative results were sent to participants via email. Preliminary HIV-positive results were delivered to participants via phone. Delivery of HIV-positive results followed a protocol that included provision of referrals to local healthcare resources to facilitate confirmatory testing and linkage-to-care, published elsewhere (D’Angelo et al., 2021). Research staff successfully delivered results via telephone to 68% (n=132 of 195) of participants who mailed in tests that indicated a preliminary HIV-positive result. Participants who successfully received a test result by phone were eligible to participate in the in-depth interview (IDI).

Qualitative In-depth Interviews

In total, 132 participants were invited to participate in the qualitative IDI. Invitations were sent by email approximately three months after participants received their preliminary positive test results. MS, JLR, and CG conducted one-on-one, semi-structured, audio-recorded phone interviews between March 2018 and January 2019. Participants provided verbal informed consent, completed the 60-minute interview, and were given a $40 incentive for their time. These procedures were reviewed and approved by the Institutional Review Board at the City University of New York’s Graduate School of Public Health and Health Policy. During data collection, interviewers took notes and met regularly to compare themes to determine saturation. In total, 54 participants completed a qualitative interview; however, four recordings were lost due to file corruption, resulting in an analytic sample of 50 interviews.

Measures

Descriptive demographic and behavioral characteristics were obtained through an online survey. The qualitative interview explored participants’ prior history of HIV/STI testing, their experiences with linkage and retention in HIV care, initiation of ART, as well as any barriers and facilitators to their engagement with HIV testing and care.

Data Analysis

Recordings were transcribed verbatim, and transcripts were verified against audio recordings to ensure quality control. The conceptual framework for this analysis was rooted in the socio-ecological model (SEM), which allowed exploration of the complex interplay of multi-level factors influencing engagement in HIV care (Latkin et al., 2013). Further, data analysis was rooted in both deductive and inductive thematic coding. The deductive coding approach was informed by the SEM, allowing for the identification of codes based on the engagement-in-care literature. The first author performed an initial close read of 20% of the transcripts, identifying initial codes and categorizing them thematically. The first author coded all transcripts, and the second author independently reviewed the codebook containing coded excerpts from the transcripts, highlighting content, and noting any overlap or discrepancies between the excerpts and their codes. Throughout the coding process, the first and second author adjusted the codebook to reflect emergent data, through an inductive coding approach. Any discrepancies were discussed with the coding team until consensus over the application of each code was reached.

RESULTS

Descriptive statistics are presented in Table 1. Participants (N = 50) had a mean age of 31.7 years (SD = 8.0). Fifty-two percent identified as persons of color, all participants identified as cisgender male, with most (94%, n = 47) identifying as gay, queer, or homosexual; the remaining 6% (n = 3) identified as bisexual. The majority reported having some college education (58%, n = 29). Almost half of participants (46%) were uninsured and did not have a primary care provider (48%). Finally, almost two-thirds (62%, n = 31) lived in the southern US.

Table 1.

Socio-demographic and behavioral characteristics of GBMSM with diagnosed HIV from across the USA, 2018-19, n=50

Characteristic	Median	SD
Age	29.0	8.10
	Frequency	%
Race/Ethnicity
White	24	48
Black	8	16
Latino	14	28
Multiracial	4	8
Sexual Orientation
Gay, Queer, Homosexual	47	94
Bisexual	3	6
Education
< High school diploma	2	4
High school diploma or GED	5	10
Some college or technical school training	29	58
College graduate +	14	28
Employment Status
Full-time (40 hours per week)	27	54
Part-time (less than 40 hours per week)	7	14
Full-time student	9	18
Unemployed/Other	7	14
Annual Income
Less than $20,000	22	44
$20,000-$49,999	20	40
$50,000+	8	16
Has a main partner
Yes	18	36
No	32	64
Health Insurance
Yes	27	54
No/do not know	23	46
Has a Primary Care Provider
Yes	26	52
No/do not know	24	48
Engaged in sex work (past 12 months)
Yes	16	32
No	34	68
Housing Instability in past 5 years
Yes	20	40
No	30	60
Self-reported HIV Status at Baseline
HIV-negative	14	28
I don't know; I am unsure	36	72
Have you ever been tested for HIV?
In the past 12 months	17	34
More than a year ago	26	52
Never	7	14
Prior PrEP use
Yes	2	4
No	48	92
Diagnosed with an STD in the last 12 Months
Yes	10	20
No	40	80
Region
Northeast	7	14
South	31	62
Midwest	3	6
West	9	18
Pacific, US Territories, Others	-	-

Thematic analysis identified five themes and several sub-themes related to participants’ engagement in care: 1) Reasons for HIV testing, 2) Linkage-to-care, 3) Barriers to gngagement in care, 4) Facilitators to engagement, and 5) PrEP as a missed prevention opportunity. Exemplary quotes accompany each theme.

Reasons for HIV testing

Thirty-four percent of participants reported testing for HIV within a year prior to enrollment and 14% said they had never tested for HIV. Seventy-two percent of participants self-reported being unsure of their HIV status at the time of enrollment. Participants detailed their reasons for testing through the study. A salient reason emerged from their accounts:

Increased Convenience through Home HIV self-testing

Many of the participants noted that they joined the study for the ability to test for HIV in the comfort and privacy of their homes. Most expressed not having tested in a significant amount of time and reported that the study allowed them to test without having to take time off to visit a clinic or a doctor. Some participants preferred this method because they had limited access to testing sites or local clinics were a significant distance from their home.

“I felt like it was a whole lot better because like I didn't have to go be around anyone really. I just do it in the comfort of my home, send it off, and then you get the results over the phone and I knew you usually have to go in to do that, but I didn't have to come in for the results its all over the phone. So I do like that a whole lot more, you know just be in the comfort of my home and it's either a phone call or I call in to get results.”

(28 years, black, Mississippi)

“I live on an island so there’s only one hospital I could go to. The reason why I got a mailed test from you guys is because I was scrolling Facebook, saw the ad, and it had been a while since I had gotten tested… at the time I didn’t have health insurance so I couldn’t go to the clinic here. It had been a long time, maybe a year that I had been tested prior to that so it was definitely time.”

(30 years, multiracial, California)

Linkage-to-care

At the time of the IDI, participants had received their preliminary HIV diagnosis an average of 4 months prior (Range [3, 7]). The majority (94%, n = 47) had been linked-to-care and had received a confirmatory diagnosis by a healthcare provider, while only three-quarters (74.5%, n = 35) reported initiating ART. Among the three participants who had not sought care, two avoided making an appointment out of fear of confirming their positive results; the last reported many competing priorities like moving, school, and loss of employment.

“I had not really wanted to see that positive test result on paper. Just the reality of it. Ignore it, it goes away.”

(44 years, white, Alabama)

“No, not yet. It's a lot of trouble since then and I'm moving, school, I'm losing my job. So I really just, there's just been a lot going on but I just really haven't been able to.”

(28 years, black, Mississippi)

Thematic analysis of the data resulted in two salient themes related to linkage-to-care: issues with appointment scheduling or logistics and social support as encouragement to linkage.

Issues with Appointment Scheduling or Logistics

Although the majority of those in care reported little issues once they had been linked, most expressed difficulties in scheduling their initial appointments, being referred to places outside their county, and only being able to reserve appointments that were scheduled weeks or months after their initial call.

“I called them to set up the appointment, they said that I had to go to the one in the county that I was living in, and so then I called them but they didn't have any appointments because they only do testing on Tuesdays. So they referred me to a different clinic in a different county, and they got me in the same day to do the testing, confirmed everything, and signed me up with one of their doctors to start treatment”

(26 years, white, California)

“I then called [a doctor that was recommended] and then scheduled an appointment to be seen with that doctor. That took about, maybe two months. Yeah, before I got to be seen by the doctor, the infectious disease doctor.”

(35 years, Latino, Texas)

Social Support as Encouragement to Linkage

Some participants pointed to family and friends as sources of not only emotional but instrumental support after receiving their diagnosis. Their support system often offered words of solace, encouraged them to seek care, and at times, took them directly to a health clinic to get confirmatory testing.

“Um, I had somebody that was already, uh, with them, that's a friend of mine… Um, pretty much is just like, "Okay, I need to go get everything taken care of." And he was like, "All right, well, I'll go ahead and make a call, get you an appointment to be seen with the caseworker and get your … get everything going."”

(35 years, white, Texas)

“I do have a support team, and I was just like my support team they were just like, "Regardless of whatever happens, whatever you go through, we're still going to be here for you." So it was like, they kinda helped motivate and pushed me a little bit, pushed me towards going, 'cause I was, honestly I was really nervous about it, and I didn't think I was gonna go.”

(27 years, black, Georgia)

Barriers to Engagement in HIV Care

Financial Burden

Participants articulated finances as a major barrier to sustained HIV care engagement. Participants who did not have insurance were forced to decide whether to hold off attending appointments or initiate ART and risk being billed for it later. In fact, participants often cited feeling uneasy regarding their lack of control over being able to pay for their care and the bureaucracy related to obtaining public assistance.

“I’m a college student. I don’t have any money. So I had to send off like a whole bunch of paperwork saying that like I don’t have income to pay for this medicine. And then, they said it would take like 6 weeks and that was like in May that they got me to like come back and do that. You know like that’s been the most difficult part is knowing that like I don’t have the medicine right now. Knowing that like it’s like attacking my body and then having to go fill out all these papers to like prove that I’m like poor enough you know. Like it’s, the process just takes so long that you just give up half way through you know.”

(22 years, Latino, Texas)

“What really got to me or made it difficult for me was my finance. I didn’t have the money to go see a doctor. I didn’t have the funds to actually pay for medication. And, and that scared me. That really scared me. In the sense that, what if I really do need medication and I’m to a point that I need medication now and I can’t afford it?”

(29 years, Latino, Florida)

Competing Priorities

Most participants cited a diverse array of social issues that they had to prioritize over their medical appointments. Specifically, several participants reported periods of unstable housing, which resulted in delays initiating ART or attending appointments; others reported that their work or school schedules conflicted with appointments, often feeling a need to choose one over the other. For some, this resulted in delays to receiving care.

“I’m actually kind of homeless, my family is kind of there for me, I mean they’re there for me as much as they can be. I haven’t started medication yet, but I have met with my doctor and we’ve been talking about it and I should actually be starting medication for it probably within the next two, three weeks. By the time I get everything situated on my end.”

(24 years, white, California)

“I would say the only thing that was inconvenient was because I had school and most of these doctor's offices or appointments in clinic are open, um, you know, when I get out of school and won’t be open when I could have a school. So I’ve had to take a lot of time at a school.”

(18 years, black, Texas)

Fear and Stigma

Some participants expressed feelings of fear and anxiety over visiting their doctors or clinics. Particularly, some participants were concerned with being recognized and outed for their status and sexuality. Others were concerned about societal stigma for being HIV-positive.

“Well, I just have this fear of going to the doctors. So, usually anytime before even, but now it's like even worse. It takes me maybe three appointments before I actually show up. Because I just get such anxiety like the week before and then it just builds and builds and builds. 'Cause like I'm just waiting for them to tell me the next thing I'm dying from.”

(29 years, multiracial, Pennsylvania)

“My thoughts were well what if I ran into somebody that I know? It’s not that I don’t want to go but what if I’m just scared or chicken out? Once I got in, it was also just a little nerve wracking. You know to figure out what was going to happen to me then. How bad I was and how bad the situation was going to be or is.”

(29 years, Latino, Florida)

Facilitators to Engagement in HIV Care

Financial Assistance

At the time of diagnosis, participants expressed concerns over their ability to pay for HIV care, with many citing financial hardships or lack of insurance. Similarly, participants widely cited financial assistance, either through government sponsored health insurance, drug assistance programs, or co-pay assistance programs, as the main reason they initiated ART and were able to afford care. In turn, some reported feeling relieved that clinic staff helped sign them up for financial assistance during their medical appointments.

“They have a program, the state does, for people that aren’t working that … you get insurance and it’s good for as long as you’re not working. They pay for everything, doctor visits, they pay for one medication a month for like antibiotics stuff like that. It’s a separate program than what is paying for my Genvoya. That, I got a letter from the actual manufacturer saying that because of the situation I’m in, they will not charge me for it.”

(39 years, white, Texas)

“They signed me up while I was there. Gave me the information to go online to finish signing up, but basically had done all the work for me. They made sure that even my co-pay is paid. I don't pay a dime and then they contact me every month just to verify my address and make sure that I'm not running out of pills earlier.”

(47 years, white, Connecticut)

Kind, Comforting, and Thorough Providers

Participant interactions with HIV care providers had a significant impact on their engagement in care. Good communication, kindness, and efficiency in care were essential to consistent engagement, whereas not feeling respected, cared about, or listened to were reasons for disengagement. Participants also cited the importance of providers who thoroughly explained treatment options and addressed their concerns.

“The doctor is very, very nice. For anybody who's going through this, you don't-- obviously I didn't want to tell anybody, it's like something personal, and obviously at the very beginning, it's very hard, you need an outlet but you don't know who to talk to. And so, when I talked to the doctor I felt like, it's somebody that I could- obviously understands my situation. And I had all these questions and he was able to kind of answer them. And then put my … put my mind at ease, not to be so stressed about it.”

(35 years, Latino, Texas)

“It was a little bit confusing trying to find the right clinic at the very beginning you know, when you're stressed out and everything. But, um, actually everyone I talked to was super nice, super helpful. Um, the clinic is probably the part that impressed me the most, because they were just like, on top of everything. Trying to make it as quick as possible.”

(26 years, white, California)

Auxiliary Support Services

A salient aspect of participants’ narratives was the importance of having available, comprehensive auxiliary social services. Participants reported that these services acted as facilitators to care engagement and, equally important, care retention. In most cases, these services included: support groups, mental health services, transportation assistance, medication delivery, and housing assistance.

“They're going to try to help me with subsidized rent. Um, also they helped me with transportation, as far as getting back and forth to my appointments so I don't have the worry about stuff like that or if I can’t ever make an appointment. And they was willing to work with me like, just whatever help I needed to make sure I make my appointments so there's never a reason that I'm not able to get my medicine or appointments or stuff like that. And then, I like the fact that sometimes, 'cause I work a lot, so I was like, if I'm not able to pick up my medicine, they do deliver it to me in the mail so that works for me also. So when I get off, I still … there's no excuse or no reason not to have my medicine.”

(27 years, black, Georgia)

“There can be some kinda, like, counseling center, that at least someone can go to and talk about things like this, 'cause sometimes people just wanna talk. Or, I know there's numbers and things that people give us, but sometimes people wanna talk to someone face to face. Don't wanna be over the phone, they wanna actually speak to someone, uh, face to face like we get that emotion and that feel from someone else.”

(23 years, black, Texas)

Health Agency

Agency was discussed in terms of caring for oneself, and in taking responsibility for one’s own healthcare. Participants often spoke about being strong and doing what needed to be done to access care and remain healthy. According to participants, if the drive or motivation was not there, then it was foreseeable that individuals would neither seek help nor care for their overall health. These participants often expressed a strong sense of self-reliance.

“I mean I can make up a bunch of excuses, to tell myself but, I mean, there were definitely opportunities when it could have happened, but I just chose to not go through with it just because I wasn’t ready to hear it myself if it were actually a positive result. At some point becomes like a personal responsibility thing as to whether or not you’re going to follow, you know, advice on what people say or do, whether or not you gonna engage and stuff. For me, you know, it was I knew about it, I knew that it was a possibility and I just kind of didn’t care at the time.”

(29 years, Latino, Florida)

“It's because people have to take the initiative to wanna prevent things like this from happening… it's our responsibility to make sure that we're protecting ourselves like we need to. And if you don't take the initiative to do that, then there's really not much that you all can do. 'Cause once again, it takes two to tango. If you wanna protect yourself, you have to make sure that you're doin' that. You can't have somebody force you. So not, not necessarily much I don't think.”

(23 years, black, Texas)

PrEP as a Missed Prevention Opportunity

Many participants considered starting PrEP prior to their HIV diagnosis but missed the opportunity due to a variety of reasons. A few participants considered initiating conversations with their providers about PrEP and their concerns about potential symptoms but either waited too long or had issues scheduling these appointments. Others were unsure where to get PrEP or who they could speak to about it. Two participants initiated PrEP conversations with providers; one provider discouraged the participant from initiating, saying that PrEP was unreliable, and the other admitted they didn’t know enough about PrEP to prescribe it, which frustrated the participant.

“I checked it out a couple times out of curiosity online, and- and wasn't sure like, you know, it says how hard it is on your liver, or it was. I think it might have been improved by then. So, I just kind of weighed options, and stalled, and I feel like I waited too long, unfortunately, to get on that.”

(47 years, white, Florida)

“I did ask my doctor, my previous PCP, who had been my doctor for 15/16 years, I did ask him about going on PrEP. You know “hey I want to go on PrEP” and he gave me this deer in the headlights look like “what is that? I don’t what that is.” And so like I explained to him. It’s truvada, it’s you know pre exposure prophylaxis, and he’s just like ‘you would need to go, go to the downstairs where they have the communicable diseases department where they might know. And I was just like I was like aggghh.”

(43 years, multiracial, Hawaii)

DISCUSSION

Linking and retaining GBMSM with diagnosed HIV in primary care is critical from both a disease management and epidemiological perspective (Chandler et al., 2019; Dyer et al., 2018; Robertson et al., 2015; Skarbinski et al., 2015). Despite a robust and multi-faceted national strategy to end the HIV epidemic, there continue to be fall-outs in care, especially among GBMSM of color (Chandler et al., 2019; Dyer et al., 2018). Our findings highlight avenues for improving engagement in care from a status neutral approach. For instance, we identified factors that impede swift linkage and adequate engagement in HIV care, including financial burden, competing priorities, and fear and stigma. Our findings also point to factors that facilitate linkage and engagement, such as financial assistance, positive patient-provider interactions, auxiliary support services, and individual health agency.

Participants identified the ability to test comfortably in the privacy of their own homes as a facilitator to HIV testing, highlighting the potential of HIVST. Studies have shown that HIVST is a highly acceptable alternative to venue-based testing for GBMSM, facilitates more frequent testing, and could lead to higher risk reduction (Balán et al., 2014; Lippman et al., 2018). In fact, widespread distribution of HIVST kits may increase testing rates among those who are not typically engaged by testing centers but suspect they may be HIV-positive (Johnson et al., 2017; Ortblad & Stekler, 2020). This is a particularly salient finding given the EtE push towards identifying individuals who are unaware of their HIV infection and recent data showing that once diagnosed, GBMSM are more likely to become engaged and retained in care (Chandler et al., 2019).

Participants identified barriers and facilitators to successful engagement in HIV primary care that can guide public health best practices. Health agency, defined as an individual’s inner capacity to overcome obstacles related to their illness, was prevalent in our findings (Canoy & Ofreneo, 2017; Ocloo et al., 2020). At the individual level, men reiterated the need to take responsibility for their own health care. They further emphasized that cultivating an inner drive or mentality to remain healthy was a facilitator to accessing care. In describing the sense of responsibility they felt towards their own health, participants often alluded to becoming more educated about HIV to engaging in care. The research on health agency in HIV care is scant, making this finding particularly innovative. A 2015 study of patient agency in healthcare settings described how patients often struggled to become knowledgeable about their condition and could fail at managing it (Hunter et al., 2015). Given this, a way to potentially increase engagement in care is to increase patient’s autonomy and health agency through patient health education. Further, our findings suggest that patient education, provided through the clinic or other behavioral interventions, may significantly impact patients’ engagement in care. Participants also noted the desire to have medical providers who treated them with kindness and respect, listened to their concerns, were empathic to their diagnosis, and were communicative. Research on patient empowerment has shown that positive experiences with healthcare professionals, where patients are educated, are given an active role in their care, and treated with kindness can lead to high-quality care delivery (Jørgensen et al., 2018; Ocloo et al., 2020). A 2016 study on empathic communication found that providers who actively exhibited empathy with their patients, in fact, promoted emotional connections and encouraged patients’ self-efficacy regarding medication adherence (Flickinger et al., 2016). Moreover, stigma within patient-provider relationships greatly contributes to the lack of trust that GBMSM have in the medical system; addressing this stigma can maximize patient retention and overall health (Hetrick et al., 2017). Studies have shown that compassion-based medical practices can improve patient response to care, by modifying affective responses, such as perceived stress and stigma (Yu et al., 2021). In fact, HIV care delivery studies have found that patients are willing to work with inconveniences in the healthcare encounters as long as providers have nice attitudes suggesting that, besides a redesign of service delivery, strategies should prioritize trainings for improvement of provider attitudes to promote patient empowerment and reduce stigma (Kang et al., 2014; Zanolini et al., 2018). These strategies require considerable structural shift within clinical environments given the limited time providers have with patients and an ever-increasing workload. Nonetheless, training curricula, like SAMHSA’s LGBT Training Curricula for Behavioral Health and Primary Care Practitioners, can be an effective avenue for continuing medical education.

Further, many participants simultaneously cited feeling a need to connect with other HIV-positive individuals as a way of coping with their own diagnosis, and also maintaining themselves in care. In fact, many reported receiving instrumental and emotional support from friends and family when looking to confirm their HIV diagnosis. Establishing a good support system has been documented in several studies as a buffer for negative health consequences, contributing to improved medication adherence and overall care (Genberg et al., 2016; Taylor et al., 2018).

Men echoed the importance of sustaining health policies that help PLHIV cover medical costs and have been found to increase ART adherence as well as retention in care, such as the AIDS Drug Assistance Program (ADAP), the Ryan White Program, and housing support programs (Taylor et al., 2018; Wohl et al., 2017). These findings point towards the need to help HIV-positive clients have a stable environment where they can prioritize their own health. Housing instability is a well-known factor impeding engagement in HIV prevention and care (Aidala et al., 2016), and remains an important priority since sexual minority adults make up a significant proportion of the homeless adult populations in the US. As such, institutional-level policies, such as the federal HIV housing assistance program, remain a pivotal benefit for low-income HIV-positive adults and a significant contributor to the EtE campaign.

At the organizational level, participants emphasized how auxiliary support services, such as transportation coverage and mental health care, can make a difference in their retention in care. Similar findings have been found by Remien et al. qualitative study of PLHIV (2015), and by Rooks-Peck et al. in their meta-analysis study of mental health and retention in care (2018). Many participants noted being interested in PrEP prior to their HIV diagnosis but were not prescribed it in time. Some described not receiving necessary counsel from their primary care doctor, with one participant being discouraged against PrEP use, which represented a significant missed prevention opportunity. These findings are similar to those documented in studies of provider-related barriers to PrEP access (Patel et al., 2018; Spinelli et al., 2020). These provider-related factors suggest that organizations could benefit from more concerted efforts to provide resources to and arrange yearly capacity building for their providers to maximize skills surrounding communication, sexual history taking, and prescribing PrEP (Boekeloo, 2014).

These findings helped generate insights, themes, and nuances regarding GBMSM’s experiences accessing health care. However, these findings may not be generalizable to the general GBMSM population in the US. Our recruitment strategy explicitly emphasized “free at-home HIV testing” as well as compensation for completing study assessments. Those with more severe HIV testing anxiety and those who may be unknowingly living with HIV may not have enrolled in our cohort. Further, we only interviewed participants to whom we could successfully deliver an HIV test result over the phone; as such, their experiences may differ from those who tested HIV-positive but avoided our delivery efforts. In addition, our recruitment strategies led us to interview individuals who were more likely to be engaged in HIV care. As such, our findings may have been influenced by selection bias. Despite many themes being salient across our sample, our study would have benefitted from the perspectives of individuals who were not engaged in care. Further, we cannot rule out that social desirability may have influenced study findings, as participants may have softened or minimized negative experiences in care.

Conclusions

As health officials seek strategies to curb the epidemic, they must pay close attention to engaging PLHIV in primary care. By individualizing care to meet the needs of GBM, the public health sector comes much closer to achieving sustainable, undetectable community viral loads. Furthermore, by addressing the root causes behind an individual’s reasons for forestalling or disengaging from care, such as homelessness, poverty, and racial/ethnic disparities, we can move closer to reaching the UNAIDS 90-90-90 targets. Notably, half of our sample identified as people of color. Therefore, the present findings signify perspectives from individuals who are most disenfranchised in the HIV epidemic. Particularly, this vulnerable sector needs support at the individual, organizational, and policy level to overcome the obstacles that hinder their navigation of the healthcare system. Although our data was collected prior to the COVID-19 pandemic, our findings are congruent with current shifts in healthcare delivery. For instance, many patients had positive experiences with mail-in prescriptions and some expressed issues with the timing of their refills. Because of the pandemic, many HIV healthcare providers shifted to longer prescription refill periods and virtual visits to minimize disruptions in ART and viral suppression (McGinnis et al., 2021). This shift can be beneficial for rural patients who may not have the means to see a provider regularly due to distance. Finally, the healthcare system must provide more resources to increase staff capacity building to combat the unique challenges faced by this population.