PrEP Awareness & Demand Creation: Overlooked Populations and Opportunities to Move Forward

INTRODUCTION

PrEP is Underutilized by Those Most Likely to Benefit

Pre-exposure prophylaxis (PrEP) for HIV prevention has been available since 2012, but uptake remains both low and inequitable.^1–3 In 2022, only 36% of the 1.2 million people with indications for PrEP had received a prescription for it, with profound race, age, gender and geographic disparities in PrEP use.^4–6 Black Americans account for 42% of new HIV diagnoses, but only 14% of PrEP users nationwide.^2,4,7 In contrast, White Americans represent 26% of new HIV diagnoses, but 64% of PrEP users.⁷ Americans aged 55 and older are least likely to use PrEP, while women account for only 8% of PrEP users.⁷ Despite these disparities, most HIV health initiatives have prioritized sexual minority men (SMM: men who do not identify as heterosexual or straight).^8–11 Thus, while PrEP is for all, it does not reach all.¹²

A robust body of research has described scores of individual, clinical, and structural factors that challenge HIV prevention.^13–21 This paper focuses on consumer factors, how individuals’ perceptions of PrEP, especially among those most likely to benefit, influence its uptake. By perception, we include awareness, at a minimum knowing that PrEP exists and is available. Awareness may be superficial or detailed and may include accurate and inaccurate beliefs. Research on HIV-related health disparities has noted significant variations in levels of PrEP awareness.^10–12 Once people become aware of PrEP, the next step is developing knowledge about PrEP and the opportunity to provide education, to describe its benefits for HIV prevention, and provide information about dosing, administration and potential side effects. Knowledge may generate interest in PrEP, creating an opportunity to address the fit of PrEP to an individual’s needs, a complex set of steps that includes weighing risks and benefits. Finally, if interest is translated into wanting PrEP, strategies to increase PrEP access are imperative to achieve the ultimate goal of enabling PrEP use among those who could benefit.²²

Together, these steps comprise demand generation, which “refers to the strategic process of initiating, managing, and increasing consumer interest, desire, and need for a product or service through targeted marketing, advertising, and promotional efforts.”^23,24 While awareness interventions aim to increase the accurate information about PrEP, demand-creation efforts aim to increase the desire for PrEP.^25,26

Theoretical Approaches to Demand Generation of PrEP

Demand creation interventions use many tools to increase awareness of and demand for PrEP, including social marketing, social and behavior change communication, theories of behavior change, user-centered design, and PRISM RE-AIM, an implementation science framework that considers individual and multi-level factors that impact program outcomes.^27–31 More recently, demand-generation strategies have emphasized outcomes that prioritize health equity.³² In our view, PRISM RE-AIM, offers a comprehensive organizing framework for approaches to enhance demand creation strategies. ³³ Its components --Determinants, Implementation Strategies, Mechanisms, and Outcomes – readily incorporate approaches such as social marketing, behavior change communication, and user-centered design (Figure 1).

Figure 1:

Determinants, Implementation Strategies, Mechanisms, and Outcomes

The objective of this paper is to describe how consumer perceptions of PrEP differ across population groups, and identify how gaps in PrEP awareness, knowledge and interest – referred to as “demand” in this paper - disproportionately affect populations vulnerable to HIV, including cisgender and transgender women, sexual minority men (SMM) youth, older adults and people who use drugs. Although we will synthesize evidence-based interventions to improve PrEP demand in populations heavily burdened by HIV, evidence on the effectiveness of these interventions for priority populations in the US is limited.³⁴

PrEP Demand in Health Care Settings

The disparities in demand generation can be attributed in part to a lack of interventions that systematically address gaps in awareness and foster sustained interest. Healthcare providers are expected to counsel individuals about PrEP, yet many fail to do so.^35,36 Despite the Centers for Disease Control and Prevention (CDC) guidelines recommending that providers discuss PrEP with all sexually active individuals, data suggest that this has not been implemented consistently. For example, Black cisgender women, despite their increased risk for HIV, are rarely told about PrEP by a provider;³⁷ those who are, sometimes report negative experiences.^38,39 Similarly, a national survey of over 6,000 cisgender men and transgender persons who have sex with men found that fewer than one-third had discussed PrEP with their healthcare provider.⁴⁰ Moreover, transgender men often report the lack of provider counseling as a barrier to PrEP use.⁴¹

PrEP Demand Among Cisgender and Transgender Women

The HIV epidemic among women in the US remains a critical public health issue, particularly among Black cisgender and transgender women.⁴² In 2022, 47% of new diagnoses among cisgender women and 62% of new HIV diagnoses among transgender women were among those who were Black.⁴³ However, PrEP uptake is disproportionately low relative to the HIV diagnoses among both populations. Research indicates that about 17% of Black transgender women and fewer than 2% of Black cisgender women who could benefit from PrEP have been prescribed it.^44–46 Collectively, these data suggest that there is a large gap in PrEP awareness among Black cisgender women, and underscore a need to strengthen demand creation efforts and improve access to PrEP for both Black cisgender and transgender women.

An important contributor to the suboptimal uptake of PrEP among women is lack of awareness that PrEP is appropriate for them.^47–50 Studies with women have shown that many are unaware of or are misinformed about PrEP.^43,51–60 For example, among a representative sample of PrEP-eligible, Black cisgender women enrolled in the National HIV Behavioral Surveillance (NHBS) study, only 34.8% were aware of PrEP.⁶ Although transgender women generally have higher levels of PrEP awareness, they are frequently grouped with SMM in research and messaging which can hinder efforts to develop strategies specifically tailored to their needs.^61–63

Pervasive messaging about PrEP fosters the misconception that PrEP is not appropriate for women.^53,59,64 This mistaken belief is reinforced by PrEP advertising that predominantly features SMM and lacks images or narratives of women or people of color, signaling that PrEP is not relevant for them.^59,64,65 Similarly, Black transgender women indicate that messages that center on white SMM may deter Black transgender women from initiating PrEP.⁶⁵ However, recent initiatives to reduce HIV incidence are increasingly focused on enhancing PrEP awareness and highlighting its appropriateness for women.^66,67

Intervention research to address low awareness among cisgender and transgender women in the US is still nascent. However, individual-level, peer-led interventions, decision-aids, and mobile applications that guide PrEP decision-making have shown promise in increasing PrEP knowledge among women both in the US and globally.^40,68 A peer-led intervention in hair salons in the US South significantly improved PrEP knowledge among Black cisgender women, but its impact on PrEP intentions was modest.⁴⁰ In a study among Black and Latinx cis- and transgender women, 69% reported interest in PrEP after participating in a peer-led intervention, yet none initiated it.⁵⁹ Another study evaluating a women-focused decision-making tool resulted in a 64% increase in those who were interested in PrEP among cisgender women who used substances; however, none of them actually initiated PrEP.^69,70 These data suggest a large gap in PrEP awareness exists among women and highlight the critical need to improve PrEP messaging to increase perceived appropriateness and uptake among both cis- and transgender women.^49,50,71

PrEP Demand Among Cisgender and Transgender Men

Awareness and education campaigns about PrEP, often sponsored by federal, state and local governments, public health agencies, and LGBTQ advocacy groups, have targeted their messages to SMM, and these have been quite successful. In 2022, men accounted for 92% of all PrEP prescriptions in the US. However, significant disparities in PrEP uptake persist by race, ethnicity, age and sexual orientation.⁷ Among SMM participating in the 2021 (NHBS) Study, 89% were aware of PrEP, but only 42% had used it in the prior 12 months.⁶ Uptake was lower among Black and Native Hawaiian/Other Pacific Islander SMM, as well as those under 25 and over 50 years of age, highlighting disparities even when knowledge is high. Similarly, in a national survey of transgender men conducted between 2017–2018, 91.5% were aware of PrEP, yet only 26.2% reported ever using it. ⁷² Likewise, in the 2019 NHBS Study, just 29.2% of heterosexual men at higher risk for HIV were aware of PrEP, and only 0.4% had used it.⁶ Notably, Black heterosexual men accounted for 6% of new HIV infections in 2021, the largest proportion of new HIV infections in the US after SMM and Black women.⁷³ These findings indicate that while PrEP awareness is relatively high, interest and use remain limited.

PrEP Demand Across the Lifespan

In 2021, adolescents and young adults (AYA) aged 13–24 accounted for one-fifth of new HIV diagnoses in the US; 82% were young SMM (YSMM). Among YSMM, Black and Latino individuals accounted for 53% and 34% of new infections, respectively. Despite PrEP being approved for use by AYA in 2018, its uptake remains low.⁷⁴ In 2022, AYA accounted for only 13% of PrEP users overall, compared to 40% among those aged 25–34.⁷ Thus, PrEP coverage was only 24% among youth who could benefit from it.¹² PrEP awareness and use are particularly low among transgender and non-binary AYA, with only two-thirds aware of PrEP, and just 7% having been prescribed it.⁷⁵

Minor consent laws for HIV/STI testing and treatment vary by state and significantly affect access to HIV prevention services.⁷⁶ As of 2021, minors in all 50 states can independently consent to STI and HIV testing and treatment. However, only 32 jurisdictions permit consent for STI prevention services, and 33 jurisdictions⁷⁷ permit consent for HIV prevention services, including PrEP.⁷⁷ Some states require clinicians to apply specific criteria before minors can consent, several states lack confidentiality protections for youth, and few states prevent healthcare payors from disclosing services to guardians.⁷⁸

Older adults also face additional vulnerabilities that influence their use of PrEP, such as increased social isolation, depression, polypharmacy, multiple medical comorbidities, and stigma,^79,80 which can hinder PrEP access and uptake. Those age 55 and older accounted for 10% of the new HIV diagnoses in the US, but had the lowest rate of PrEP use⁸¹ (46 per 100,000) among any age group in 2022. Psychosocial factors affect access to PrEP and are rarely considered in demand generation initiatives across the lifespan.

PrEP Demand Among Persons Who Use Drugs (PWUD)

In 2019, people who inject drugs (PWID) comprised 3% of the US population but accounted for 7% of new HIV infections.⁷³ Despite this high risk, PrEP is vastly underutilized among this group.^82–84 National data from 19 US cities found that while PrEP awareness among PWID increased from 25.6% in 2018 to 35.3% in 2022, use remained at 1.2% in both years.⁸⁵

The barriers that contribute to low PrEP uptake among PWUD occur across individual, clinical and structural levels.^86,87 At the individual-level, PWUD frequently report low self-perceived HIV risk and/or knowledge of PrEP.⁸⁸ At the clinical-level, the medical system does not provide the infrastructure and capacity for PrEP delivery for a highly mobile population with unique needs such as PWUD,⁸⁹ while providers themselves have reported less willingness to prescribe PrEP to PWUD than to other populations.^20,90 Yet, foremost among these are structural barriers, where housing instability, involvement with the criminal justice system, and lack of financial resources, insurance, identification, or a safe place to store medications complicate the ability to seek care.⁹¹

To address these challenges, several strategies have emerged to increase awareness and uptake of PrEP, including the utilization of peer navigators and outreach,⁹² mobile self-service HIV testing, ⁹³ and partnerships with community-based organizations.⁹⁴ The latter approach offers several benefits for PrEP delivery by facilitating access to PWUD populations and providing peer support. Pairing PrEP services with syringe service programs⁹⁵ or organizations that support people experiencing homelessness⁹⁶ has been shown to increase awareness and uptake. Similarly, integrating PrEP services with medication-assisted treatment for substance use disorders may increase PrEP utilization, as this strategy has been associated with improved outcomes for HIV and HCV treatment.^97–102 Finally, the development of long-acting injectable PrEP (LAI-PrEP) is promising, as PWUD express a clear preference for this option over daily oral medication.^71,86–88

PrEP Demand Among Those with Intersecting Marginalized Identities

Structural inequalities amplify PrEP-related disparities by limiting health knowledge, and reducing engagement in health-seeking behaviors, including access to HIV prevention services.^17,103,104 These inequalities may limit access to information and prescriptions for PrEP, particularly among individuals with multiple intersecting marginalized identities. For example, the Detroit Youth Passages study involving 278 young adults who exchanged sex for money found that unstable housing was a significant predictor of disengagement from healthcare services.¹⁰⁵ Limited or poor access to healthcare, a particularly challenging barrier for people experiencing housing instability,¹⁰⁶ is pervasive in the US South, and may contribute to the fact that this region has one of the greatest PrEP-to-Need ratios (proportion of PrEP prescriptions compared to number of new HIV diagnoses) compared to other US regions.^2,12,107,108

Financial concerns are significant barriers to PrEP use across a number of priority populations.^109,110 Misinformation, or a lack of knowledge around co-pays, and the availability of financial support for PrEP (e.g., patient assistance programs) can impede PrEP uptake.¹¹¹ Media reports of insurers denying coverage to PrEP users contribute toward negative perceptions of PrEP,^112,113 and patient concerns regarding insurance¹⁰⁷ and ability to pay for PrEP may impact providers’ willingness to prescribe PrEP.^114,115 Therefore, ensuring accurate messaging regarding cost, insurance, and availability of financial support for PrEP is essential to increase demand for PrEP.

Medical mistrust exacerbates structural inequities, further hindering use of PrEP by persons with marginalized identities.^116–119 For example, Black women report feeling less comfortable talking with healthcare providers about sexual matters than white women, often due to mistrust and negative patient-provider communication patterns.^120,121 In addition, Black women have indicated their providers never initiated conversations about PrEP, and they did not bring up PrEP over concern of being judged negatively.^38,122,123 Furthermore, this mistrust also poses significant challenges for engaging female sex workers, a group facing multiple layers of marginalized identities, and who often lack trust in a healthcare system that should provide a safe space to learn about and access PrEP.^124,125 Therefore, it is imperative that effective policies, procedures, and interventions are put into place to build trust in the medical system and improve providers’ skills to foster open, judgment-free conversations with patients, particularly those most at risk for acquiring HIV,^126,127 such as sex workers.

Health care stigma is also a major barrier to acquiring knowledge about and accessing PrEP.^17,128–130 “Intersectional stigmas” may influence the type and quality of information providers deliver¹³¹ when providers’ biases and discriminatory beliefs affect their PrEP-prescribing behaviors.^103,128 Therefore, implementing effective strategies to reduce structural inequalities is essential to increase engagement across the PrEP care continuum for populations burdened by HIV.¹³² Figure 1 shows drivers of PrEP demand, possible implementation strategies, and mechanisms of action that raise PrEP awareness and increase uptake.

Ramping Up Demand for PrEP

PrEP awareness and equitable use remain low due to both demand-side barriers and accessibility challenges.² Essential supply-side interventions, such as expanding point-of-care access, must be supplemented with demand-side interventions that raise awareness, dispel misconceptions, provide knowledge and help people determine if PrEP is a good option for them. To date, most such interventions have focused on SMM and consist primarily of online campaigns and use of peer navigators, with scant attention to other priority groups -- women, heterosexual cisgender men, transgender men, people who use drugs, adolescents and older populations.^59,133,134 Fortunately, recent efforts to address demand creation among women show some promise^135–138 These include the development and evaluation of mobile applications, peer-led interventions, and decision-making tools for both cisgender and transgender women in the US.^139,140 Digital communication strategies have been particularly effective with youth.²⁵ A 2021 systematic review highlighted the success of social media campaigns in increasing PrEP awareness and uptake among women and young Black and Latinx SMM in the US.¹⁴¹ Social media also shows promise for reaching transgender men as those using social media for health information were more likely to use PrEP.^62,142

PrEP demand generation recognizes that the needs of different groups are not uniform. Tailored approaches should consider specific locations, trusted messengers, and effective messaging to engage priority populations effectively. However, it is unclear what makes strategies effective. Should audience segmentation principles be used to target subgroups with messages most useful for them, or should messaging target diverse populations to avoid stigma?²⁵ For example, a mixed-methods study found that Black SMM considered campaigns featuring predominantly Black SMM to be stigmatizing, whereas diverse couples in advertisements were found to be more engaging and motivating.¹⁴³ Campaigns can minimize stigma by normalizing PrEP use, building networks of mentors and influencers, reaching communities through targeted advertising, public service announcements, and social media. However, multiple perspectives remain on whether targeted or broader non-targeted campaigns may be most successful.

Healthcare providers can play a critical role in promoting PrEP awareness through initiating PrEP conversations with clients.^10,17,18,144 Yet, numerous clinic- and provider-level barriers hinder their ability to discuss and prescribe PrEP, including low provider PrEP knowledge, medical mistrust among clients, and logistics.¹¹⁸ Multifaceted strategies that encompass targeted, inclusive, and non-stigmatizing interventions to educate providers about PrEP, and support them to initiate and manage clients on PrEP are needed.¹⁴⁵ Successful examples include public health detailing initiatives from the San Francisco Department of Public Health and the New York City Department of Health and Mental Hygiene, which train clinicians on PrEP implementation and encourage them to prescribe PrEP.^146,147

Telehealth is also a promising strategy to facilitate differentiated service delivery by lowering barriers to accessing PrEP, such as transportation, availability of appointments and barriers related to stigma and confidentiality.^148,149 Telehealth has been feasible and acceptable by clients and healthcare providers, ^150,151 and delivery of services via Telehealth has grown widely.¹⁵¹ Future projects may develop and facilitate strategies to provide Telehealth PrEP for individuals that do not have reliable phone service, as the flexibility of this model offers significant advantages to lower barriers and reach a greater number of individuals in need of PrEP.^152,153

Implementation science offers valuable insights into increasing awareness and scaling demand for PrEP by identifying key determinants for success and identifying strategies to minimize burdens on vulnerable groups through streamlined systems. Although research on demand creation strategies and user-centered design for effective PrEP programs is sparse,¹⁵⁴ several strategies and tool kits that build PrEP awareness and uptake have emerged, including peer navigation,⁶⁸ partnerships with community-based organizations,¹²¹ and integration of PrEP with syringe service programs⁹⁵ and organizations serving people experiencing homelessness.¹⁴⁸

DESIGNING A PATH FORWARD

Effective interventions to increase PrEP demand involve integrating multiple strategies that address awareness, knowledge, interest/motivation, and access. One strategy is normalizing PrEP, framing universal messages that convey PrEP is for everyone while acknowledging that specific needs and experiences vary across user groups, and avoiding campaigns that unintentionally stigmatize PrEP use. The effectiveness of various strategies in generating demand for PrEP has not yet been fully evaluated. While systematic reviews and meta-analyses exist for evaluating demand creation strategies for SMM,^142,155 we were unable to identify similar publications for heterosexual or transgender men in the US.

For women, strategies to increase PrEP knowledge and willingness to use PrEP have been studied across multiple levels. At the clinic or provider-level, interventions such as provider trainings and PrEP clinical decision support tools have been evaluated or are under evaluation for their effectiveness in increasing PrEP awareness among women,^156–159 and are effective in increasing individuals’ PrEP knowledge, awareness, and access. However, few studies have specifically focused on providers serving women (e.g., sexual and reproductive healthcare providers, gynecologists, obstetricians) have been evaluated. The limited training programs evaluated for these cadres of healthcare providers have shown great promise and large effects, leading to increased PrEP offerings, referrals, and prescriptions.^156,159 At the community-level, social and traditional media campaigns are the primary strategies for raising PrEP awareness among women.

The utilization of implementation science frameworks and theories of behavior change are essential to address both demand generation (interest in PrEP) and supply side barriers to PrEP provision. Yet, demand creation typically has not been integrated as a full partner in PrEP program planning, putting supply side interventions at a disadvantage. Effectively raising awareness about PrEP’s benefits and generating demand could be justified based on behavioral theory and implementation science. Figure 2 details the ways the target population’s characteristics -- such as age, geographic location, and cultural context -- and the product’s attributes interact. Co-creating messages and strategies with users can help craft a coherent narrative that is relevant, appealing, non-stigmatizing and impactful. Incorporating newer PrEP options, such as long-acting injectables, may further expand uptake across diverse multiple populations.^61,86,88,160 Additionally, offering PrEP at low or no cost is essential to reducing barriers to access.¹³⁶

Figure 2:

Action Steps Towards Increasing PrEP Awareness and Demand

Clearly, more research is needed to evaluate the effectiveness of demand-creation strategies, particularly regarding the credibility of message delivery agents, the content of the messages, and the messages are presented to drive demand for PrEP. Ultimately, the goal of all strategies should be to increase PrEP awareness and reduce HIV-related disparities among vulnerable populations: PrEP is for all, but one size does not fit all.