The Centers for Disease Control and Prevention (CDC) in September 2017 made a statement that “when antiretroviral therapy (ART) results in viral suppression, defined as less than 200 copies/ml or undetectable levels, it prevents sexual HIV transmission” (National Gay Mens HIV/AIDS Awareness Day|Dear Colleague LettersNCHHSTP|CDC, 2019). This statement strengthened the campaign launched in 2016 by the Prevention Access Campaign to spread awareness of the effectiveness of ART in preventing sexual HIV transmission, popularly referred to as “Undetectable = Untransmittable” (U = U) (Prevention Access Campaign – The Revolution in Living and Loving with HIV, n.d.; Eisinger et al., 2019). The U = U campaign is founded on strong scientific evidence (Cohen et al., 2011; Rodger et al., 2019), and it has important implications for people living with HIV (PWH) from a scientific and public health perspective.
First, U = U frees virally suppressed PWH from the shame and fear of sexually transmitting HIV to their partners. This freedom may improve their sexual, reproductive, and social lives (Rendina, Talan, et al., 2020). Second, it helps to attenuate the HIV-related stigma that has impeded progress in HIV prevention and control since the beginning of the epidemic (LeMessurier et al., 2018). Third, it reduces HIV testing anxiety and encourages PWH to adhere to treatment, stay healthy, and prevent transmission (Smith et al., 2021). Therefore, U = U offers a way to control the HIV epidemic.
Although scientific evidence supports U = U, its success as an HIV prevention and control measure hinges on its widespread acceptance by PWH. However, recent studies that assessed U = U perceptions among PWH, their HIV-uninfected partners, and HIV care providers have reported diverse views. First, although many HIV care providers believe in U = U, some were concerned that PWH may engage in risky sexual practices such as having multiple sexual partners if they gain knowledge of U = U (Ngure et al., 2020). Second, although PWH showed some level of acceptance of U = U in most of these studies (Siegel & Meunier, 2019), their HIV-uninfected partners were skeptical about the accuracy of U = U in preventing HIV transmission (Ngure et al., 2020). One study also mentioned the need to investigate further the apparent skepticism of men who have sex with men toward U = U because they reported “low perceived effectiveness of U = U compared with daily preexposure prophylaxis in reducing the risk of HIV transmission” (Siegel & Meunier, 2019).
However, studies exploring U = U perceptions have not reported the views of older adults, an important, growing subpopulation of PWH. Currently, more than 50% of PWH are older adults (50 years or older) (HIV in the United States by Age, 2022), and it is projected that by 2030 more than 70% of PWH will be older than 50 years (Wing, 2017; National Gay Men's HIV/AIDS Awareness Day|2017|Dear Colleague Letters|NCHHSTP|CDC, 2019). Older adults face many challenges, such as loneliness and isolation because of illness, loss of family and friends, or a lack of community support (Brown & Weissman, 2020; Greene et al., 2018). Studies have also reported a high occurrence of depressive symptoms (Mayston et al., 2020) and “double stigma” (ageism and HIV-related stigma) (Brown & Adeagbo, 2021) among older adults living with HIV (OAH). All these factors negatively affect their self-image, behaviors, and quality of life (CDC, 2021). Therefore, older adults may be less willing to test for HIV, disclose their HIV status, or get the care they need (CDC, 2021). Nevertheless, aging has been positively associated with resilience (Ong et al., 2009), and studying an aging population of PWH offers some benefits, in that many OAH were diagnosed with HIV when they were younger (HIV, AIDS, and Older Adults, n.d.), and they may have been on HIV treatment long enough to have attained an undetectable viral load. Therefore U = U may be more meaningful to such a population.
A history of childhood sexual abuse (CSA) has been shown to negatively affect ART adherence (Willie et al., 2016). According to the CDC, experiencing CSA (before age 18 years) affects physical health and results in behavioral and psychological adverse consequences. For instance, depression, posttraumatic stress disorder, and emotional behavior may be the long-term results of CSA (Fast Facts, 2022). Thus, CSA may interfere with behavioral responses and attention deficiency, interfering with HIV care and medication adherence. A lack of trust in care providers because of a CSA history and HIV-related stigma could prevent ART adherence (Relf et al., 2019). Hence, OAH with a CSA history may have a higher tendency to avoid getting the care they need and adhering to prescribed HIV treatment.
This creates a significant hindrance to HIV control efforts and the vision of “ending the HIV epidemic in the U.S. by 2030” (Ending the HIV Epidemic, n.d.). Because the population of OAH is growing, knowing the views of OAH on U = U may be beneficial in designing HIV prevention and control interventions that could encourage other older adults to test for HIV, enroll in treatment to achieve viral suppression, and improve their self-image and overall quality of life. Therefore, this study sought to explore U = U views among OAH. This study's findings may help determine whether U = U awareness and education need to be expanded among this population.
Methods Setting and ParticipantsThis study forms part of a parent study examining the perspectives of aging with HIV within the context of having a CSA history using a phenomenological qualitative research approach (Brown, Nkwonta, James, et al., 2022; Brown, Nkwonta, Kaur, James, Haider, et al., 2022). From October 2019 to February 2020, we conducted cross-sectional, open-ended interviews with OAH receiving ART at an HIV clinic in South Carolina. We recruited study participants through flyers and with help from the clinic staff. Interested individuals contacted the research team in-person at the HIV clinic to determine eligibility and schedule an interview. Inclusion criteria for the parent study included “(a) living with HIV, (b) ≥50 years of age, (c) self-reported CSA experiences before age 18, years, and (d) lack of severe cognitive impairment” (Brown, Nkwonta, Kaur, James, Haider, et al., 2022). Out of the 55 individuals who asked about the study, 30 of them had not experienced CSA before the age of 18 years and therefore were excluded. Of those who met the inclusion criteria, one participant failed to attend the interview. Hence, 24 individuals took part in this study and were compensated with a $20 gift card each. This study focused on participants' perspectives on U = U. Other articles have been published from this data set, focusing on (a) intimacy and sexuality (James et al., 2022), (b) HIV disclosure (Brown, Nkwonta, James, et al., 2022), (c) CSA perspectives (Brown, Nkwonta, Kaur, James, Conserve, et al., 2022), and (d) CSA stories (Kaur et al., 2023). This study reports views of the study population on Undetectable = Untransmittable, which has not been reported in any of the previous publications.
Data Collection InstrumentThe research team is a diverse group of researchers that have experience in researching psychosocial challenges among PWH in the United States and internationally. The senior author (M.J.B.) has researched childhood sexual trauma for several years and has received training in trauma research among PWH. This team of experts collaboratively developed the open-ended interview guide (see Supplementary Material, https://links.lww.com/JNC/A45) used in this study. Participants' views on aging with HIV, drug use, ART adherence, U = U, and how CSA affects living with HIV were explored with the help of the interview guide. Examples of statements that were used to explore participants' views on U = U were as follows: “The CDC had a press release in September 2017, which stated that ‘When ART results in viral suppression, defined as less than 200 copies/ml or undetectable levels, it prevents sexual HIV transmission’ (National Gay Men's HIV/AIDS Awareness Day|2017|Dear Colleague Letters|NCHHSTP|CDC, 2019). Some organizations refer to this as U = U. What are your views on this statement? What are your views on HIV disclosure regarding this statement?”
Data CollectionThe clinic staff informed interested patients about the study and interview appointments were scheduled for those who were eligible and consented to take part in the study. Interviews were conducted face to face, audio-recorded, and lasted an average of 31 min (16–62 min). Research assistants trained in qualitative interviewing methods conducted the interviews after obtaining informed consent from each participant. Privacy and confidentiality were ensured by assigning a unique ID number to each participant and conducting interviews in a private setting. We explored the views of OAH with a history of CSA on U = U, following the open-ended interview guide (Brown, Nkwonta, Kaur, James, Haider, et al., 2022). The University of South Carolina Institutional Review Board approved this study (IRB Approval Number: Pro00084536).
Data AnalysisWe performed verbatim transcription of audio-recorded interviews using Otter, a transcription software developed by Otter.ai (Los Altos, CA). We analyzed our data using thematic analysis (Saldaña, 2021). At the beginning of the data analysis, two research team members independently listened to the recordings and made corrections to any errors identified in the transcripts. This was to assure methodological precision and ensure that transcripts correctly denoted participants' statements. This was followed by line-by-line coding of transcripts by four research team members. These four team members independently coded transcripts and collapsed the codes into overarching subthemes and themes and met to reconcile the individually identified subthemes and themes, how themes relate to each other, and how well the themes reflected the perspectives of study participants on U = U (Brown, Nkwonta, Kaur, James, Haider, et al., 2022). For example, each author further categorized the initial codes by independently providing a basic categorization of how they were similar or different. The multiple categories were condensed into fewer and more streamlined categories (which we called subthemes). The subthemes were further categorized into a second set of subthemes based on similarities, differences, and relationships between the subthemes. The final themes were categories developed based on commonality to reflect possible groupings and interrelationship arrangements. The Consolidated Criteria for Reporting Qualitative Research (see Supplementary Material, https://links.lww.com/JNC/A46) served as a guide for the reporting of this study. We used code meaning and code frequency counts to evaluate saturation (Hennink & Kaiser, 2022). Saturation has been shown to occur within 9–17 interviews in empirical research (Hennink & Kaiser, 2022).
Methodological rigor in qualitative research is usually assessed using transferability, dependability, credibility, and confirmability (Brown, Nkwonta, James, et al., 2022). By purposively recruiting study participants, continually returning to transcripts, and giving a good description of the data, we attained transferability (Cypress, 2017). We achieved credibility and dependability by interviewing participants to elicit information on their lived experiences and reviewing transcripts to confirm themes (Cypress, 2017). Using an audit trail, by describing how we generated themes through codes, we established confirmability (Moran, 2018).
ResultsThe study participants were 24 OAH (12 men, 11 women, and one transgender), with a mean age of 55.21 years (SD = 4.69). Most of them were straight/heterosexual (50%), Black/African American (66.67%), Disabled/Unable to work (41.67%), Never Married (63.63%), and had an undetectable viral load count (60.87%) (Table 1). Three major themes emerged from the analysis: (a) conflicting beliefs in U = U: lack of belief in U = U and belief in U = U; (b) use condoms regardless; and (c) fear of HIV reinfection.
Table 1 - Sociodemographic Characteristics of Participants (N = 24) Characteristics No. (%) Age, years 50–54 14 (58.33) 55–59 5 (20.83) 60+ 5 (20.83) Sex Male 12 (50.00) Female 11 (45.83) Transgender 1 (4.17) Sexual orientation Straight/heterosexual 12 (50.00) Bisexual 3 (12.50) Gay/lesbian 9 (37.50) Current relation status** Married/cohabiting 4 (18.18) Separated/divorced/widowed 4 (18.18) Never married 14 (63.63) Race Black/African American 16 (66.67) White 6 (25.00) American Indian/Alaska Native 1 (4.17) Native Hawaiian/Pacific Islander 1 (4.17) Education level Grades 1 through 12 11 (44.83) Bachelor's degree 2 (8.33) Some college/associate/technical degree 11 (45.83) Employment status Employed 5 (20.83) Disabled/unable to work/retired 11 (45.83) Unemployed 8 (33.33) Yearly household Income*** Less than $10,000 13 (61.90) $10,000+ 8 (38.10) Viral load (copies/ml)* Undetectable/less than 200 14 (60.87) 200–500 2 (8.70) >500 7 (30.43)* = 1 missing value; ** = 2 missing values; *** = 3 missing values.
Study participants reported conflicting beliefs in U = U. Although most participants did not believe in U = U, some participants expressed belief in U = U. Participants' knowledge of U = U inspired their belief or lack of belief in U = U. Most of those who believed in U = U had acquired scientific knowledge of U = U through conferences or had personal observation-related knowledge of U = U. Participants who did not believe had never heard of U = U or did not have sufficient knowledge of it.
Lack of belief in U = USome of our study participants expressed a lack of belief in U = U. One participant who did not believe had never heard of U = U, and another believed that U = U gives people an excuse not to use condoms. Even participants who had heard of U = U from their physicians did not believe in U = U.
Even though I am in a committed relationship, my partner and I still use condoms. But I heard this thing about if you are undetectable, then you can't affect [sexually transmit HIV]. I don't think that's true. I know that's what the doctor says, but I don't believe that one. (54-year-old Black male)
I'm [a] realist [regarding] that [U=U]. Sometimes I think it gives people an excuse to not use protection, [it] shouldn't, but I'm thinking it does. (51-year-old Black male)
One participant stated that U = U was a cover-up by the government to make more money from the HIV epidemic. He believed that there was a cure, but the government was withholding the cure.
CDC, hear this because I believe you are bullshit. Y'all already have a cure for this and y'all just put this [U=U] out here to make more money. Having the virus [as] opposed to having AIDS, how it was years ago, with all the money and research that people had put into this. This entire project over [the] years, it's been billions and billions of dollars. (52-year-old Black male)
The lack of belief in U = U expressed by some study participants could be linked to medical or public health science distrust and their level of knowledge about U = U.
Belief in U = UHowever, some participants mentioned that they believed in U = U. Participants expressed excitement about U = U, stating that U = U is a good thing, a blessing! Their belief was based on their knowledge of U = U gained through conferences or personal experience.
Um, I believe the scientific data that somebody can't get HIV from somebody whose viral load is suppressed 100% and who sticks to the regimen. (58-year-old White male)
I believe it [U=U]. I believe it because I know a lot of people who [are] positive, [and] have negative person spouses, significant others, partners, and they [have] not had protected sex and the negative person [has] not caught the virus. So, I've been to a conference [on] U equals U in XXX [location name withheld]. I've seen the results, the studies, I know about it, and I believe it. (50-year-old Black female)
Responses from participants who believed in U = U reflected their excitement and acceptance of U = U. These participants believed that U = U is a good thing for OAH. One participant who believes in U = U expressed hope that U = U would bring about attenuation of HIV-related stigma.
I mean, there's still such a big stigma with it. I think it's a great progression. I am just hoping that it'll go over and people understand. (54-year-old White female)
The remaining participants did not state whether they believed or did not believe in U = U.
Use Condoms RegardlessDespite the opposing views on U = U expressed by study participants in the first two themes, many participants strongly recommended the continual use of condoms, irrespective of being virally suppressed. This was inspired by a need to feel safe and protected.
Do use some protection because I mean that's what you said but who knows, nobody knows you know. It might [referring to the risk of HIV infection] …. You got to use protection to be on the safe side. That's the bottom line. (53-year-old Black male)
The determination and recommendation to avoid condomless sex were expressed by both participants who believe in U = U and those who do not believe. Participants did not think that being undetectable should be a reason to have condomless sex.
I am very cautious to use protection when I have a sexual partner because right now, I don't tell everybody that I'm undetectable. (51-year-old White female)
We all have our own choice to make on protecting ourselves. So even though you're suppressed, you still need to use protection because there are other things out there that can affect you in a much stronger way than they might affect other people. (58-year-old White male)
Being safe and feeling protected from sexually transmitted infections seems to be an important motivation to use condoms, regardless of viral load status.
Fear of HIV ReinfectionFear of being reinfected with HIV also influenced the decision to use condoms irrespective of being undetectable, as reported by some study participants.
That's just the way I want to have sex with my number one person. I have [sex] with protection because I don't know what your thing [viral load] is and you don't know what my thing [is]. So, we don't need to be mixing in two things. Let's just be safe than sorry. (54-year-old Black male)
Participants were concerned that reinfection could result in the development of new HIV variants, necessitating the use of different ART regimens to suppress it.
From my understanding, if you have two positive people and one is taking their medicine, and they are undetectable but the other one is not … then having sex with them without protection could actually make a mutant strand of HIV … which means you would have to change your medications to try to suppress that one. (54-year-old White female)
Protection from infections, including HIV reinfection, was a key factor in deciding on continual condom use among study participants, irrespective of being undetectable. HIV reinfection could make their lives more stressful, hence the determination to avoid being reinfected.
DiscussionU = U is an important HIV prevention and control method. It offers a way to improve the overall quality of life for PWH through the reduction of HIV-related stigma and improvements in social and reproductive life. However, its effectiveness as an HIV prevention and control method is contingent on its acceptance by PWH and the general population. Because OAH are a growing population, their views on U = U are important. Therefore, we explored U = U views among OAH, drawing from a press statement released by the CDC in 2017.
Although some older adults in this study expressed belief and excitement about U = U, most were skeptical about it and expressed a lack of belief in U = U. However, most study participants emphasized the importance of continual condom use, irrespective of belief or unbelief in U = U. Their determination and recommendation to use condoms were in some ways engendered by the fear of HIV reinfection. Currently, the literature is lacking on U = U views among older OAH, but studies conducted among populations of Sexual Minority Men (SMM) (gay, bisexual, and other MSM) in the U.S. and Canada have also reported mixed findings on the acceptance of, or belief in, U = U among PWH.
Some participants in our study expressed excitement, belief, and confidence in U = U, stating that it could help them live a long normal life. Some previous studies have also reported acceptance of U = U among PWH (Rendina, Cienfuegos-Szalay, et al., 2020; Torres et al., 2020). For instance, findings from a large study conducted among US SMM reported that virally suppressed PWH were more accepting of the accuracy of U = U, compared with HIV-uninfected or status-unknown men. In that study, four out of five PWH considered the message to be “somewhat or completely accurate” (Rendina, Cienfuegos-Szalay, et al., 2020). Similarly, findings from other studies also suggest that PWH are more likely to consider U = U as accurate, compared with HIV-uninfected and status-unknown men (Siegel & Meunier, 2019; Torres et al., 2020).
This finding is important, especially for OAH because they deal with both ageism and HIV-related stigma (Brown & Adeagbo, 2021). One participant expressed hope that U = U would bring about attenuation of HIV-related stigma. Previous qualitative studies report that undetectable status leads to multiple positive outcomes for PWH, including fewer experiences of HIV-related stigma (Grace et al., 2018; Grace et al., 2020). Participants in one study reported that U = U made them “feel much better” about their own HIV status and could reduce HIV-related stigma (Rendina, Talan, et al., 2020). Because U = U helps reduce HIV-related stigma (LeMessurier et al., 2018), its acceptance by OAH could help in some ways to reduce some challenges associated with aging and living with HIV (Smith et al., 2021).
However, most OAH in this study expressed skepticism and a lack of belief in U = U. One participant stated that U = U was a cover-up from the government. Another participant said that U = U gives people an excuse not to use condoms. This finding is consistent with reports from previous studies (Card et al., 2018; Rendina & Parsons, 2018; Siegel & Meunier, 2019) conducted among SMM in the United States and Canada. A qualitative study conducted among SMM in Canada reported that participants' views on U = U suggest “complete disbelief or rejection of the phrase (e.g., ‘I don't believe in that’) and the perception that there was still a small chance of getting HIV” (Grace et al., 2020). Several factors could contribute to the low acceptance of U = U in our study population.
Race/ethnicity and sex of study participants could play a role in the low acceptance because more Black men did not believe in U = U compared with White men in our study population. Studies have reported mistrust of the health care system by Black/African Americans, and more than half of our participants were Black/African Americans (Brown, Nkwonta, Kaur, et al., 2022). According to studies, PWH who engage in treatment are more likely to accept U = U; thus, Black/African Americans' mistrust of the health care system may lead to less engagement in treatment and, as a result, less acceptance of U = U (Rendina, Talan, et al., 2020). Future studies should dig deeper into the role of race/ethnicity and sex in the acceptance of U = U using a larger and more diverse sample of PWH. Participants' fear of being reinfected with HIV could be an important contributing factor to their lack of belief in U = U. Future studies should also look at how the fear of HIV reinfection influences acceptance of U = U. Clearly, findings are mixed regarding the acceptance or belief or confidence in U = U among PWH. However, these mixed findings do not lessen the importance of U = U, considering the immense benefits U = U offers to PWH.
Findings from a Canadian study among SMM suggest that a belief in U = U could lead to more condomless sex (Card et al., 2018). However, most of our study participants clearly stated that they would continue to use condoms, irrespective of whether they believed in U = U or not. This shows that the participants are cognizant of the importance of condom use in preventing sexually transmitted diseases, including HIV.
These findings are of grave importance to the fight against the HIV epidemic in the United States because belief or confidence in U = U could help reduce sexual HIV transmission, reduce HIV-related stigma, promote adherence to ART, and improve the general well-being of PWH (LeMessurier et al., 2018; Rendina, Cienfuegos-Szalay, et al., 2020; Rendina, Talan, et al., 2020; Smith et al., 2021). It is important to note that those who believed in U = U had gained knowledge about U = U through conferences or had personal observation-related knowledge of U = U, whereas those who did not believe had never heard of U = U or did not have sufficient knowledge of it. Therefore, education on U = U is vital for its acceptance. To enhance belief in U = U, clinicians could incorporate U = U education into routine services provided to PWH. This could be done along the HIV treatment cascade because belief in U = U could positively affect every step of the HIV treatment cascade. However, it is worth mentioning that there is a need for comprehensive education, along with U = U awareness. For example, condom use should still be encouraged for protection against other sexually transmitted infections because misinformation on U = U could dissuade PWH from using condoms.
LimitationsThe study has some limitations worth mentioning. First, all participants in this study were recruited from an HIV clinic and were on ART. Therefore, we do not know the views of older PWH with a CSA history who are not on ART or are not receiving routine HIV care at an HIV clinic. The views of those not in care could have made these findings more generalizable. Second, because of time constraints, we focused mainly on participants' views on U = U and did not specifically ask participants about HIV-related stigma or discussion of U = U with their health care workers. Responses to these questions could have helped us better understand how HIV-related stigma and patient–provider interactions influence acceptance or belief in U = U. Third, although our study population was OAH with a CSA experience, we did not explore how a CSA history could influence U = U views. This study was part of a parent study, and CSA was not the focus of this study. finally, we did not use interrater agreement methods to determine differences in coding among authors. Despite these limitations, the study examined the views of a population on U = U and therefore expands the research on perceived views and acceptance of U = U among PWH.
ConclusionsDespite strong scientific evidence supporting U = U, there is a lack of belief in U = U among some OAH. This lack of belief could deprive OAH of the benefits U = U offers, such as reduced self-stigma and improvements in their sexual, reproductive, and social lives. Therefore, it is important that clinicians educate their patients living with HIV about U = U to enhance their understanding and belief in U = U. Intervention programs with educational components addressing U = U are needed, especially among OAH. In addition, future research should examine how to incorporate in-depth educational U = U campaigns into HIV care and treatment.
DisclosuresThere are no conflicts of interest to disclose for any author.
Author ContributionsAll authors on this paper meet the four criteria for authorship as identified by the International Committee of Medical Journal Editors; all authors have contributed to the drafting or been involved in revising it, reviewed the final version of this manuscript before submission, and agree to be accountable for all aspects of the work.
Specifically, using the CRediT taxonomy, the contribution of each author is as follows: Conceptualization and methodology: M.J. Brown, P.N.O. Addo, S. Qiao. Data collection: T. James, A. Kaur. Formal analysis: M.J. Brown, T. James, A. Kaur, C.A. Nkwonta. Manuscript development: P.N.O. Addo, M.J. Brown, S. Qiao. Manuscript review and revision: P.N.O. Addo, M.J. Brown, S. Qiao, T. James, A. Kaur, C.A. Nkwonta. Funding acquisition: M.J. Brown.
Availability of DataData for this study is available upon request.KEY CONSIDERATIONS Clinicians are recommended to educate their patients living with HIV about U = U to enhance their understanding and belief in U = U. Intervention programs with educational components addressing U = U are needed, especially among older adults living with HIV. Future research should examine how to incorporate in-depth educational U = U campaigns into HIV care and treatment.
AcknowledgmentsThis work was supported by the National Institute of Mental Health of the National Institutes of Health under Award Number (K01MH115794). M.J. Brown was the principal investigator for this award. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
The authors thank the clinic staff who helped with recruitment and the participants who took part in the study and shared their experiences.
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