Introduction
In the United States (US), Black/African American men who have sex with other men (BMSM) are disproportionately affected by HIV and experience significant differences in HIV incidence, access to HIV care, and prevention across all ages.
1–4 In 2021, 71% of the estimated 36,136 new HIV diagnoses in the US were among men who have sex with men (MSM), including BMSM (36%).
5 Similarly, in Iowa, MSM accounted for 73% of the 120 new HIV diagnoses and 54% (
n = 1,743) of the 3228 persons with HIV (PWH) in 2022.
6 Of the 120 new HIV diagnoses in Iowa in 2022, 25% were among Black/African Americans and mostly males (77%).
6 Although 4% of an estimated 3.1 million Iowans were Non-Hispanic Black/African Americans, they accounted for 24% of PWH in 2022.
6 According to the Iowa Department of Public Health (IDPH) 2023 surveillance report, Non-Hispanic Black/African Americans were over 10 times more likely to be diagnosed with HIV than Non-Hispanic White Iowans.
6 Similarly, the Centers for Disease Control and Prevention (CDC) estimated that 50% of Black/African American MSM in the US will be diagnosed with HIV in their lifetime.
7To address the disparity in HIV incidence and prevalence across all races, one of the four US government strategic goals (ending the HIV epidemic (EHE) initiative) to eradicate HIV epidemic by 2030 is the expansion of pre-exposure prophylaxis (PrEP) – the use of prescription medication to prevent the spread of HIV – to reduce new HIV infections especially among priority populations such as MSM.
4,8,9 Through the EHE initiative, the US government seeks to reduce new HIV infections by 75% in 2025 and 90% by 2030.
8 Recent biomedical advancements have produced new HIV prevention methods such as PrEP to effectively curtail new HIV infections and several studies have found PrEP to be highly effective for HIV prevention especially for those at-risk.
3,10–12 For example, an increase in PrEP use and improved HIV testing have played an important part in recent declines in new HIV diagnoses in the US.
13 Despite the effectiveness of PrEP in preventing HIV, its uptake especially among minority MSM is very low across the US.
2,9,10 Common barriers to PrEP uptake identified in the literature included PrEP-related stigma, poverty, lack of adequate medical insurance, mistrust of healthcare systems, homophobia, providers’ negative attitudes, PrEP availability and access especially in rural areas, and misconceptions about PrEP.
3,14–22 Research has also shown inconsistencies in how providers assess HIV risk factors and PrEP eligibility for MSM.
19,23 If not addressed, these barriers pose a serious challenge to the US plan to end HIV epidemic by 2030.
Furthermore, recent surveillance data from the CDC revealed that about 26% of the estimated 1.2 million adults who had indications for PrEP were prescribed PrEP in 2022 across the US, 81.3% were males, and 38.5% were Black/African Americans.
24 The majority of these eligible candidates for PrEP use were MSM (>70%)
3 when considering likely sources of HIV risk, with 69% PrEP coverage in White, and 9% in Black individuals despite having the highest indications for PrEP across all races. Specifically, recent data from IDPH showed that 8,260 Iowans would benefit from PrEP but only about 23.3% (
n = 1,925) had active prescriptions for PrEP medications in 2021.
25 Also, a recent evaluation of the Iowa statewide TelePrEP program that sought to reduce access barriers revealed that only 10.7% (
n = 22/206) of individuals who were navigated to TelePrEP and 10% (
n = 17/167) of individuals who initiated PrEP were Black/African American, while 83% were White and 94% were MSM.
26 Although PrEP coverage is suboptimal in Iowa, success in initiating PrEP among Black/African Americans who were navigated to TelePrEP was high at 77% (
n = 17/22).
Currently, there is a knowledge gap about what factors contribute to the poor engagement of Black MSM with PrEP care in Iowa. Several PrEP studies (including reviews) have focused on barriers and facilitators to PrEP uptake among Black MSM across the US including the Midwest.
19,21,27–31 In fact, Owens et al.
17 argued that there is scant literature on PrEP uptake among MSM in general, and those living in rural areas in the Midwest in particular. Specifically, data on Black MSM PrEP uptake in the Midwest is mostly concentrated on urban cities like Chicago, and no known literature on barriers and facilitators to PrEP uptake among Black MSM in Iowa at the time of this study. To the best of our knowledge, this is the first study that sought to qualitatively identify the barriers and facilitators to PrEP uptake among Black/African American MSM in Iowa from clients’ perspectives.
Theoretically, the Capability (psychological and physical capabilities), Opportunity (social and physical opportunities), Motivation (automatic and reflective processes), and Behavior (COM-B)
32 model for behavior change was adopted in this study to show the complexities and intersection of multiple factors that impact BMSM PrEP uptake in Iowa. The COM-B framework focuses on individual’s capability, opportunity, and motivation to engage in a healthy behavior. Capability includes relevant skills and knowledge that can influence behavior; opportunity includes the impact of socioenvironmental factors on individual’s behavior while motivation is concerned with how thought processes influence behavior.
32 Michie et al.
32 developed the behavior change wheel (BCW) – a ‘layered framework’
33 – with COM-B model at its core to indicate behavioral factors that can be targeted when developing behavior change interventions. Primarily, COM-B model is premised on how the interaction of the key domains (Capability, Opportunity, and Motivation) can bring about a desired behavior.
Studies (including systematic reviews) in America, Europe, and Africa have used COM-B framework domains and constructs to report barriers and facilitators to PrEP uptake among priority populations such as female sex workers, transgender women, and MSM.
34–37 For example, the data of a PrEP study conducted in the United Kingdom (UK) were mapped onto the main COM-B constructs to tease out factors that inhibit or facilitate PrEP uptake among MSM.
35 The study found limited PrEP awareness, limited PrEP access, homophobia, and stigma to be the major barriers to PrEP uptake among MSM in the UK and no facilitator was reported.
35 The study’s results aligned with five (psychological capability, physical opportunity, social opportunity, reflective motivation, and automatic motivation) of the six COM-B subcomponents after mapping. Similarly, Camila-Bolivar et al.
36 used COM-B subcomponents to map out barriers and facilitators to PrEP uptake among transgender women in Colombia to show the intersection of many factors as well as their impact on health behavior. They identified nine barriers related to capacity (
n = 1), opportunity (
n = 6), and motivation (
n = 2) to develop potential behavioral change interventions.
Furthermore, Michie et al.
32 recommended a 3-steps method for designing behavior change interventions. The first step deals with the understanding the behavior (i.e. problem definition, selection of target behavior, identification of target behavior, and what needs to be changed), while the second step is about the identification of intervention options to change certain behaviors. Lastly, the third step deals with the identification of relevant contents and implementation options. The mapping of the current study’s findings to the key domains of COM-B model to understand barriers and facilitators to PrEP uptake among Black MSM in Iowa provides an opportunity for developing future HIV prevention interventions and implementation strategies to address ‘PrEP uptake’ as the target behavior and ‘Black MSM’ as the target group.
Results
Approximately 58% (
n = 7/12) of the study participants were students, while 42% (
n = 5/12) had no medical insurance (see
Table 2). Past or current PrEP use was not evaluated, and no participant reported using PrEP. After mapping the main themes across the three domains and subcomponents of COM-B model, six barriers were identified. Results showed that barriers to PrEP uptake were closely associated with five (of six) COM-B subcomponents: physical capability, psychological capability, social opportunity, reflective motivation, and automatic motivation (see
Figure 1). The thematized barriers were (1) lack of medical insurance; (2) limited PrEP awareness; (3) PrEP stigma; (4) fear of distrust among partners; (5) anticipated side effects; and (6) doubt about PrEP effectiveness. Similarly, facilitators to PrEP uptake were aligned with four subcomponents of COM-B model: physical capability, psychological capability, social opportunity, and physical opportunity. The thematized facilitators were (1) increased PrEP awareness; (2) PrEP access without discrimination; (3) state provision of PrEP to uninsured; and (4) physicians buy-in and recommendation. No motivation-related facilitators were reported.
Barriers to PrEP uptake among Black/African American MSM
Six key themes mapped within the three main domains and subcomponents of the COM-B model were identified as the major barriers inhibiting PrEP uptake among Black MSM. The themes were limited PrEP knowledge, lack of medical insurance, PrEP-related stigma, fear of distrust among partners, anticipated side effects, and doubt about PrEP effectiveness. The themes are presented below with narrative excerpts from the interviews.
Physical capability
Lack of medical insurance
Participants’ lower socioeconomic status was a primary barrier to PrEP uptake. Five of the study participants had no medical insurance while two had public medical insurance. Other participants with private insurance may be limited in what they could access since some of them were students and most likely be on their parents’ medical insurance. Participants indicated that they cannot access PrEP without an appropriate medical insurance due to cost. The below quotes highlighted participants’ thoughts about the impact of cost associated with taking PrEP:
I feel like the main thing, that is insurance. Yeah. Some of them [PrEP providers] ask for insurance information, and yeah. It still boils down to privilege. I don’t know if there are free PrEP initiatives here. I remember how someone told me about PrEP. He asked am I on PrEP? and I was like no. And then what he told me was, ‘You won’t be able to get it since you are not insured.’ Imagine someone who is Black and doesn’t have insurance, it’s already creating that barrier. (29 years, Johnson)
So, we have people who aren’t insured to take it so that could be one of the barriers. (33 years, Black Hawk)
Most participants alluded to lack of adequate medical insurance associated with financial capacity as a major determinant for PrEP uptake.
Psychological capability
Limited PrEP awareness
Lack of PrEP awareness is one of the key barriers to PrEP uptake among Black/African American MSM who participated in this study. Most participants reported that they had little or no knowledge about PrEP before the interviews. The following participant reported that he joined the study to learn more about PrEP:
Yeah, I’m not too conversant with it [PrEP], so that’s why I actually decided to come on this study to actually learn more about it. (33 years, Johnson)
The following participant demonstrated little knowledge about PrEP:
PrEP? Yeah, sure, I’ve heard of that, yeah. I feel is sometimes maybe a drug or injection taken by a person to prevent contracting HIV. (36 years, Black Hawk)
Limited knowledge about the benefits of PrEP and how to access it were reported by study participants. This could potentially impede on their ability to make an informed decision about PrEP use.
Social opportunity
PrEP stigma
Some participants reported the role of stigma and discrimination in accessing PrEP. Specifically, participants alluded to PrEP-related stigma and its pervasiveness in the gay community. They indicated that PrEP use is often associated with sexual promiscuity or prostitution (hook up) within the gay community, and this could discourage those interested taking PrEP due to fear of stigmatization or discrimination. The following participant provided a detailed account of PrEP stigma in the gay community:
. . . There’s like a stigma on PrEP too, like in the gay community, usually when someone is on PrEP, they see them as someone who love hooking up because if you are not hooking up, what would be the reason for you to be on PrEP? Which I think it’s stupid because accident happen, you can go to a party and then one thing leads to another and then you end up in bed with someone and then you don’t have a condom or anything, but just by being on PrEP, you actually have this piece of protection that would give you the peace of mind. (25 years, Johnson)
Fear of distrust among partners
Few participants reported that PrEP use could breed distrust in their monogamous relationships. They indicated that distrust associated with PrEP use might affect their relationships negatively. The following participant gave a detailed account of his fears:
Hmm. I don’t like the fact that you have to take a drug before engaging in sexual activity. It puts a hold on the whole thing. Because I earlier mentioned that for you to engage in a sexual relationship with a partner, there need to be a level of trust. So, you having to take a drug before you engage in sexual activities shows that there is no trust for your partner. And just imagine your partner feels that you don’t have a kind of trust for him. It sounds so awkward, and then the whole relationship would actually be jeopardized. (35 years, Johnson)
Automatic motivation
Anticipated side effects
Participants’ pessimistic thoughts about potential side effects of PrEP indicated the existence of automatic conclusions, which reflected low motivation to use PrEP. Some participants expressed fear for PrEP safety and serious side effects, such as cancer, that could emanate from taking PrEP:
. . . People like me would actually want to jump on it, but first of all, you have to actually let them [BMSM] know that it is something that is safe. There is not going to be complications in the future, you know you can be preventing HIV and AIDS, and then you start noticing that the drug is causing cancer in your system. (33 years, Johnson)
Reflective motivation
Doubt about PrEP effectiveness
Participants reported their fears about PrEP efficacy and its potential failure to protect them from acquiring HIV. This is relevant because prophylactics, like PrEP, was thought to provide a sense of security for individuals, especially priority populations (e.g. MSM), from contracting HIV. The following participant’s self-reflection about PrEP and fear of its potential failure is noteworthy:
Well, PrEP, it’s actually an effective drug, yeah, with now a beyond-90% guarantee. But in a situation where you rely so much on the drug and it fails, and then automatically you’re infected, because if it fails, you rely absolutely on PrEP, and it get to be a point where it fails. I’m just imagining the probability that it fails. So, does that mean if I should rely on this drug, it’s not hundred percent? And I’m banking on the fact that it’s supposed to give me a guarantee to have sexual activity with my partner, irrespective of his status being positive or negative. I’ve absolutely eliminated that clause of my partner being infected. What if my partner is infected, and what’s the eventuality I have sexual relationship with my partner and the drug happens to fail? Automatically I’m infected also. (35 years, Johnson)
Some participants thought that lack of testimonies about PrEP effectiveness from PrEP users, especially those with partners living with HIV, is also a major barrier to PrEP uptake. This subjective view impacts current reflective motivation to use PrEP:
Well, the barriers here are kind of the testimonies. People believe in what they see. There are people that are taking PrEP, and then there’s a way that they can come out and tell people that they have been taking PrEP and have had sex with someone that have HIV and have not had HIV. Like something that can really show the community that this is really happening. I believe it will help people to believe much better to get the drugs. But then, other people will need much persuasion . . . (24 years, Johnson)
Facilitators to PrEP uptake among Black/African American MSM
Reiterated, facilitators to PrEP uptake were aligned with four subcomponents of COM-B model: physical capability, psychological capability, social opportunity, and physical opportunity. The thematized facilitators were (1) increased PrEP awareness; (2) PrEP access without discrimination; (3) state provision of PrEP to uninsured; and (4) physicians buy-in and recommendation. No motivation-related facilitators were reported by the study participants. The themes are presented below with narrative excerpts from the interviews.
Psychological capability
Increased PrEP awareness
To improve PrEP awareness in the gay community, participants suggested that PrEP education, community sensitizations, and strategic placement of PrEP-related education, information, and communication (IEC) materials should be prioritized. Participants indicated that the provision of culturally appropriate information about PrEP through different platforms would motivate more Black/African American MSM to initiate and use PrEP:
Yeah, I think you could reach out to them [BMSM] through the radio and flyers. You could put them in the barber’s shop, the salon all the time, the supermarket. Yeah, I think those are public places that people could really access. (36 years, Black Hawk)
Another important strategy highlighted by participants is community sensitizations about the benefits of PrEP. They suggested that this could be achieved through symposia and community partnerships involving community leaders:
. . . Conducting seminars, and focus group discussion, and teaching people about it [PrEP]. This really help by impacting people about it. . .Well, by maybe the community leaders, talking to the people in the community. I think it will help. (25 years, Johnson)
Physical opportunity
PrEP access without discrimination
Participants highlighted the need for Black MSM to have access to PrEP and other health services without discrimination. Limited access to friendly PrEP and other sexual health services represented a stumbling block involved with physically gaining access to sexual health services including PrEP. Some participants shared experiences of how they were discriminated against while accessing health services:
That’s what I said that the provision of PrEP and other pharmaceutical stuff, then the accessibility to members of the Black MSM community, despite the barriers because I’ve been a victim once . . . I walked into the pharmaceutical store where I needed a medication. And checking around, I couldn’t find it and I asked the pharmacist there. It was a white lady and she told me that such medication is not there, that they don’t have that actual medication in the store. So, while I wait for them because I went to pick a couple of drugs. While I wait for purchase of others, I saw someone else who was in the store placing the medication of which I just asked the lady for on the counter. So, I felt really bad. So, I think where people do place their biases alongside of their profession, it makes it difficult to access these services. (42 years, Johnson)
Social opportunity
State provision of PrEP to uninsured
Participants indicated that lack of adequate medical insurance (especially among low-income earners) was one of the major barriers inhibiting access to and uptake of PrEP among Black MSM. They suggested that the government should provide easy access to PrEP for those at-risk of acquiring HIV, whether insured or uninsured:
Yeah, there are lots of persons who are uninsured really. And it would be nice if the government can actually make this a thing that everyone can access. Just like the self-test kit for HIV. (33 years, Black Hawk)
The provision of PrEP through low-income earners could limit social and financial limitations of accessing PrEP.
Physicians buy-in and recommendations
Participants highlighted the need to involve key stakeholders such as trusted physicians to promote and suggest PrEP to their clients especially MSM. They reported that BMSM were more likely to use PrEP if recommended by their trusted physicians:
Talking about me, my medical provider knows about my medical history. So, for you to convince me to take something like PrEP, it has to come from someone I already trust that has a medical history, someone that has that medical background, that can talk to me to convince me that this is good even though it has some side effects, but he can only be the person that would actually downplay it to let me know that this side effects will not affect me and it’s going to be good for me to actually take it. (33 years, Johnson)
Discussion
Mapping the inductive thematic results onto the COM-B model, the current study identified six key barriers to PrEP uptake among BMSM in Iowa: lack of medical insurance and limited PrEP awareness (capability); PrEP stigma and fear of distrust among partners (opportunity); and anticipated side effects and doubt about PrEP effectiveness (motivation). Also, the study identified four key facilitators for PrEP uptake: increased PrEP access without discrimination (physical opportunity); increased PrEP awareness (psychological capability); and state provision of PrEP to uninsured as well as physicians buy-in and recommendation (social opportunity). Overall, in-depth interviews with Black/African American MSM highlighted some of the current intersecting barriers and potential strategies to improve PrEP uptake among an underserved population subject to social stigmatization and prejudices.
First, lack of medical insurance and limited PrEP awareness associated with physical (e.g. socioeconomic status) and psychological capabilities (e.g. knowledge) were major barriers to PrEP uptake among Black MSM in this study. It is evident from the data analysis that limited PrEP knowledge impacted BMSM’s ability to make an informed decision about PrEP use. Locating limited PrEP awareness within the BCW, this shows the need for a tailored PrEP education in future intervention design to increase PrEP knowledge among Black MSM. This finding is not peculiar to this study as other studies and reports have highlighted the negative impact of limited PrEP knowledge
20,22,29 on PrEP uptake decisions among MSM.
18,35 As suggested by our study participants, culturally sensitive tailored PrEP-related IEC materials (e.g. flyers) and community sensitizations through educational campaigns should be prioritized to increase PrEP knowledge in Black MSM community. The use of strategic places like barber’s shop and entertainment spots frequented by sexual and gender minorities were seen as a priority. Studies and reviews from across the world have found community sensitizations and IEC materials to have positive impact on people’s decision to imbibe healthy behaviors including PrEP uptake.
45–48 Notably, participants indicated that PrEP information and recommendation from trusted sources including their clinicians would improve PrEP knowledge and uptake. Thus, the provision of adequate PrEP information using credible sources such as healthcare providers could improve BMSM’s psychological capabilities to make an informed decision about PrEP use.
31Another major barrier to PrEP uptake highlighted by our study participants is cost. Previous studies have documented the high cost (financial constraint)
18,19,49 associated with PrEP use as well as its impact on MSM especially those with lower income, underinsured, or uninsured. Although not racially aggregated, only 23.3% of Iowans who had indications for PrEP (
n = 8,260) had active prescriptions in 2021.
25 The experiences of Black MSM may be different in Iowa – a rural state with a 4% Black population. Since health outcomes among underserved communities is rooted in socioeconomic disparities, PrEP uptake among Black MSM can be improved through government provision of low-cost or free PrEP services to underinsured and uninsured as suggested by our study participants. Furthermore, a recent US report shows that HIV PrEP coverage is poor across the country due to inconsistencies in PrEP policy, while access to PrEP is solely determined by the payer.
50 To address these inconsistencies, the US Preventive Services Task Force should review the 2023 HIV PrEP recommendations
51 for any ambiguities that could affect effective delivery of PrEP.
13,50,52 Also, government should be encouraged to invest
53 in HIV PrEP to cover all modalities through the Affordable Care Act for low-income earners at-risk for acquiring HIV to have access to low-cost or free PrEP services. This will not only expand PrEP options and coverage, but it will also reduce the persistent HIV incidence and prevalence in Black MSM communities across the US. Thus, provision of financial support to cover all PrEP modalities might improve BMSM’s physical capabilities to access and use PrEP without cost barrier.
Furthermore, another important barrier impeding our study participant’s social opportunity is the pervasiveness of PrEP-related stigma and discrimination in the gay community. PrEP use is often associated with sexual promiscuity within the gay community. The association of PrEP with sexual promiscuity created social stigma that has had a negative impact on some BMSM’s decision to use PrEP to prevent HIV. In fact, some participants were afraid that it might breed mistrust in their monogamous relationships with their partners. They do not want to offend their partners or jeopardize their relationships by taking PrEP. Prioritizing their relationships over taking PrEP could be an act of fear of being alone amidst the anti-homosexuality policies across the US. Previous studies conducted in similar settings corroborate our findings about the impact of PrEP-related stigma on MSM’s PrEP uptake
17,49,54–57 including the fear of family or significant others rejection
35,58 if they are found to be taking PrEP. Addressing PrEP-related stigma especially in the gay community is key to improving PrEP awareness, uptake, and adherence especially among underserved population.
59,60 Furthermore, some participants reported unpleasant experiences of discrimination within the healthcare system. A recent study conducted in rural and urban US reported homophobia and nonaffirming providers as key factors inhibiting young sexual minority males from accessing sexual health services including PrEP.
19 Thus, addressing discriminatory practices in healthcare facilities (including pharmacies) is key to ensuring unbiased access to PrEP irrespective of one’s sexual orientation, race, or ethnicity. This can be achieved by training healthcare providers (especially PrEP providers) on cultural competence and empathy to be able to deliver more equitable care to improve patient outcomes especially Black MSM.
36,49,61,62Lastly, anticipated side effects and doubt about PrEP effectiveness had negative impact on some participants’ motivation to use PrEP. Due to past unethical research practices in Black communities, some participants were afraid that taking PrEP might lead to other health issues such as cancer. A study conducted in a similar setting in the US reported concerns about side effects as one of the main barriers to PrEP uptake among MSM.
18 Similarly, a study conducted in Colombia reported side effects as a major barrier to PrEP uptake among transgender women.
36 As discussed in the preceding paragraphs, it is evident that some participants had limited or no knowledge about how PrEP work, its benefits, and potential side effects. The findings of a study conducted in Chicago is consistent with our findings on the association of anticipated side effects with PrEP uptake among Black MSM.
55 Also, some participants were doubtful about the effectiveness of PrEP in preventing HIV, hence their reluctance to use PrEP. They were afraid of acquiring HIV even if they were taking PrEP and had sex with another man with HIV without condom. It is evident that our study participants cognitively assess their risk (e.g. perceived susceptibility, severity, and benefits) of taking PrEP and this impact their PrEP uptake decisions. Madhani and Finlay
35 reported similar findings on PrEP uptake in a sample of MSM in the UK. Other than PrEP education, PrEP promotion through trusted healthcare providers may alleviate PrEP effectiveness and side effects worries, and eventually increase PrEP uptake among Black MSM. Some of our participants would only take PrEP if it was suggested by trusted healthcare providers. Previous studies conducted in the US corroborate our findings on the need for trusted and relatable healthcare providers to promote and deliver friendly PrEP services to MSM.
19,49,59,62