“I Don’t Believe That One”: A Qualitative Study of Undetectable=Untransmittable (U=U) Views Among Older Adults Living with HIV in South Carolina

Abstract

Undetectable=Untransmittable (U=U) means that people with HIV who achieve and maintain an undetectable viral load have effectively zero risk of sexually transmitting the virus to others. However, research on how U=U is perceived by older adults living with HIV (OAH) is currently lacking. This study explored U=U views among OAH. From October 2019 to February 2020, we conducted open-ended interviews with 24 OAH recruited at an HIV clinic in South Carolina. Interviews were audio-recorded and transcribed. We employed thematic analysis in this study. Three themes emerged from the analysis: 1) Conflicting beliefs in U=U; 2) Use condoms regardless; 3) Fear of HIV reinfection. Despite strong scientific evidence supporting U=U, some OAH do not believe in U=U. This lack of belief could deprive OAH of the benefits U=U offers. It is therefore vital to educate OAH about U=U to enhance their understanding and belief in U=U.

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 Men’s HIV/AIDS Awareness Day | 2017 | Dear Colleague Letters | NCHHSTP | CDC, 2017). This statement strengthened the campaign launched in 2016 by 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 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). U=U, therefore, 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-negative 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, while PWH showed some level of acceptance of U=U in most of these studies (Siegel & Meunier, 2019), their HIV-negative 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 (MSM) towards U=U, since they reported “low perceived effectiveness of U=U compared to daily Pre-Exposure Prophylaxis (PrEP) 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 sub-population of PWH. Currently, over 50% of PWH are older adults (50 or older) (HIV in the United States by Age, 2022), and it is projected that by 2030 over 70% of PWH will be above 50 years (WING, 2017). 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 impact their self-image, behaviors, and quality of life (CDC, 2021). Older adults may therefore 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 may have been on HIV treatment long enough to have attained an undetectable viral load. U=U may, therefore, be more meaningful to such a population.

A history of childhood sexual abuse (CSA) has been shown to negatively impact ART adherence (Willie et al., 2016). According to the CDC, experiencing CSA (before age 18) impacts physical health and results in behavioral and psychological adverse consequences. For instance, depression, post-traumatic stress disorder (PTSD), 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.). Since 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 as well as 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 if U=U awareness and education need to be expanded among this population.

METHODS

SETTING AND PARTICIPANTS

This 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, Kaur, James, Haider, et al., 2021; Brown, Nkwonta, James, 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 via 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 “(1) living with HIV, (2) ≥ 50 years of age, (3) self-reported CSA experiences before age 18, and (4) lack of severe cognitive impairment” (Brown, Nkwonta, Kaur, James, Haider, et al., 2021). Out of the 55 individuals who asked about the study, 30 of them had not experienced CSA before the age of 18 and were, therefore, 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 current study focused on participants’ perspectives on U=U. Other manuscripts have been published from this dataset, focusing on, 1) Intimacy and sexuality (James et al., 2022), 2) HIV disclosure (Brown, Nkwonta, James, et al., 2022), 3) childhood sexual abuse perspectives (Brown, Nkwonta, Kaur, James, Conserve, et al., 2022), and 4) childhood sexual abuse stories (Kaur et al., 2023). This current study reports views of the study population on Undetectable = Untransmittable, which has not been reported in any of the previous publications.

DATA COLLECTION INSTRUMENT

The research team is a diverse group of researchers that have experience in researching psychosocial challenges among PWH in the U.S. and internationally. The senior author (MJ. Brown) 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) used in this study. Participants’ views on aging with HIV, drug use, ART adherence, U=U, and how CSA impacts 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: “The Centers for Disease Control and Prevention 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, 2017). Some organizations refer to this as U=U or Undetectable=Untransmittable. What are your views on this statement? What are your views on HIV disclosure regarding this statement?”

DATA COLLECTION

The 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 minutes (16 to 62 minutes). 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., 2021). The University of South Carolina Institutional Review Board approved this study (IRB Approval Number: Pro00084536).

DATA ANALYSIS

We 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., 2021). 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 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) 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).

RESULTS

The study participants were 24 OAH (12 males, 11 females, and 1 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: 1) Conflicting beliefs in U=U: Lack of belief in U=U and Belief in U=U; 2) Use condoms regardless; and 3) 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/GED	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)
Greater than 500	7 (30.43)

^*Indicates the number of missing values

CONFLICTING BELIEFS IN U=U

Study participants reported conflicting beliefs in U=U. While 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=U.

Some 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 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=U.

However, 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 REGARDLESS

Despite 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 REINFECTION

Fear 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.

DISCUSSION

U=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. Since OAH are a growing population, their views on U=U are important. We therefore explored U=U views among OAH, drawing from a press statement released by the CDC in 2017.

While 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 (Torres et al., 2020; Rendina, Cienfuegos-Szalay, et al., 2020). For instance, findings from a large study conducted among U.S. SMM reported that virally suppressed PWH were more accepting of the accuracy of U=U, compared with HIV-negative or status-unknown men. In that study, 4 out of 5 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 to HIV-negative and status-unknown men (Siegel & Meunier, 2019; Torres et al., 2020).

This finding is important, especially for OAH, since 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., 2017; 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). Since 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 (Rendina & Parsons, 2018; Card et al., 2018; Siegel & Meunier, 2019) conducted among SMM in the U.S. 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 since more Black men did not believe in U=U compared to White men in our study population. Studies have reported mistrust of the healthcare 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 U.S., since 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, while those who did not believe had never heard of U=U or did not have sufficient knowledge of it. Education on U=U is therefore 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 since belief in U=U could positively impact 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 since misinformation on U=U could dissuade PWH from using condoms.

LIMITATIONS

The study has some limitations worth mentioning. First, all participants in this study were recruited from an HIV clinic and were on ART. We, therefore, 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, due to 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 the current study. Last, we did not use inter-rater 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.

CONCLUSIONS

Despite 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. It is therefore 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.

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.

Availability of Data

Data for this study is available upon request.