Disseminating HIV Pre-Exposure Prophylaxis Information in Underserved Communities Mohan J. Dutta, PhD
Introduction
T
he distribution of HIV infection within the U.S. demonstrates consistent patterns of disparities by race, route of transmission, and the interactions between transmission route and race. Based on the evidence that documents the effectiveness of pre-exposure prophylaxis (PrEP) as a method for reducing HIV infection,1–9 the culture-centered approach (CCA), a communitybased dialogically driven participatory health communication framework, is offered as a lens for understanding the role of communication about PrEP in underserved communities that bear disproportionately higher risks of HIV infection.10,11 The term community is defıned broadly here to refer to various markers of the term, including geographic (neighborhood); demographic (race); and social networks (MSM [men who have sex with men]). Pre-exposure prophylaxis requires the prescription of daily oral doses of antiretroviral medications that are given to people without HIV infection who report sexual behaviors that place them at high risk of HIV exposure.12–15 The potential risks of PrEP include toxicity and drug resistance, and the need for strong adherence guidelines, medical follow-up, and cost are key barriers.14,15 The CCA attends to the ethical, social, cultural, political, and economic implications for disseminating PrEP information through the active participation of disenfranchised local communities who historically have been deprived of clinical and information resources.10 –12,14 –27
Culture-Centered Approach and Underserved Communities The CCA, as exemplifıed in the Sonagachi HIV/AIDS Prevention Program (SHIP) led by sex workers, foregrounds the decision-making capacity of marginalized communities in processes of change.28 –34 Local community involvement guides the consideration of solutions and the From the Center for Culture-Centered Approach to Research and Evaluation (CARE), National University of Singapore, Singapore; and the Department of Communication, Perdue University, West Lafayette, Indiana Address correspondence to: Mohan J. Dutta, PhD, Director, Center for Culture-Centered Approach to Research and Evaluation (CARE), National University of Singapore, 11 Computing Drive, Singapore 117416. E-mail:
[email protected]. 0749-3797/$36.00 http://dx.doi.org/10.1016/j.amepre.2012.09.030
subsequent intervention development including program design, development, implementation, and evaluation.30 –33 Dialogue and listening serve as the foundations for community engagement, not only as downstream tools for dissemination of information about implementation strategies, but also more importantly for upstream participation in consideration of solutions, strategy, tactics, as well as evaluation metrics and strategies.20 –22 In the realm of PrEP program implementation in marginalized communities, the commitment to dialogue calls for opening up participatory spaces that are transparent and accountable to community members on the basis of the continual sharing of evidence on the benefıts, risks, side effects, and costs. Reflexivity, referring to the continual evaluation of key decisions in the backdrop of the ongoing evidence, is driven by the community-wide sharing and evaluation of evidence as it keeps emerging through the participatory processes.24 –26,28 –34
Infrastructures of Accountability Given the potential for PrEP as a prevention strategy among high-risk populations, it is important to consider its value for communities that have been marginalized systematically such as sex workers, MSM, and injecting drug users. CCA notes that the erasure of materially disenfranchised communities from communication infrastructures lies at the heart of health disparities.28 –34 CCA suggests that the discussion regarding the effectiveness of PrEP for a specifıc marginalized community needs to rest in the hands of the community in conversation with other stakeholders, and on the basis of evidence. Therefore, not only is it important to consider domains of access to scientifıc health information among underserved communities, but it is also important to build local capacities for community participation in scientifıc decision-making processes.28 –34 Therefore, the costs, risks, and benefıts of PrEP provision in addressing disparities in HIV infection can be evaluated meaningfully by fostering participatory spaces for engagement with communities in evidence-based science. Building community capacity to engage with comparative data on effectiveness, risks, and costs for guiding community decisions is an essential fırst step. These community-driven participatory strategies may be utilized in local as well as national networks of decision making, building a national
© 2013 American Journal of Preventive Medicine • Published by Elsevier Inc.
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comparative data repository on the basis of consideration of evidence and ethical ramifıcations in a range of geographic contexts.16 –21,28 –34 Scientifıc information capacities built within communities enhance the participatory decision-making capacity of community members in engaging with the comparative evidence base of science, including them in clinical decision-making processes through access to scientifıc data that are presented in community-accessible modes.16 –27 Given the risks and costs of PrEP implementation, decisions regarding implementation need to be placed at democratic sites of decision making for evaluation and engagement by community members, in collaboration with multiple stakeholders through the continual consideration of ongoing comparative evidence.16 –21,28,29,33,34 In a nutshell, building infrastructures for disseminating scientifıc information and facilitating participation in science through culturally meaningful channels is an important fırst step in addressing the underlying disparities through the targeted dissemination of PrEP in marginalized communities.21–24,28 –34
Cultures As Dynamic In engaging with the diverse cultural contexts of clinically underserved communities, the CCA highlights the relevance of understanding the role of culture as dynamically constituted through interactions within communities.28 –34 Therefore, the meanings of specifıc interventions within communities are constituted amid the complex array of existing values and logics that flow within communities and not on the basis of cultural constructs that are imposed by cultural experts from the outside. For instance, in addressing the risks of sexual intercourse and in addressing these risks in cultural contexts, the participation of community members in identifying the cultural logics and in developing dissemination mechanisms that are sensitized to these logics is intrinsically different from top– down interventions that are defıned by outside experts based on constructs that are completely out of touch with the lived realities of local communities.28,29 First and foremost, cultural insiders ultimately come together in conversation with other key stakeholders to consider the evidence base around an intervention (benefıts, risks, side effects, costs) to determine whether to adopt the intervention.34–36 In engaging cultures as dynamically constituted, CCA suggests the value of developing culturally based community platforms for dialogues regarding the feasibility of PrEP as a solution and subsequent intervention-dissemination plans. As with the example of SHIP, turning the spaces of recognition, participation, and representation into the hands of community members fosters spaces of collective
decision making that are guided by community voices through their active engagement.16 –18,22–34 Therefore, logics of culture are identifıed and engaged by cultural insiders rather than being addressed as barriers to dissemination by outside experts who are out of touch with the lived realities of localized communities. The notion of culture as dynamic also challenges the top– down framework embodied in formative research or message testing that uses the language of participation to simply gather some preliminary data but in which the modes of decision making still lie in the hands of outside experts.
Contexts of Decision Making The decisions regarding the adoption of specifıc health behaviors, including the decision to engage clinical care to access and use PrEP, take place in dynamic and shifting contexts, situated amid localized experiences of risks and the everyday negotiations of risks among community members.30 –34 Culture-centered processes of participation attend to localized spaces of decision making that foreground the localized contexts within which PrEP decisions are made, especially highlighting the power differentials embedded within provider–patient relationships, the provision of counseling services, and the delivery of clinical services directed at underserved communities.28 –34 Therefore, the settings where PrEP may be implemented (e.g., clinics, health centers), as well as the communicative strategies of interactions guiding the processes of decision making (such as counseling clinics), are both driven by the active decisions of community members in shaping these processes through their localized cultural knowledge.28–36
Structures of Inequities The distribution and risks of HIV/AIDS differ by race/ ethnicity, SES, gender, and the interactions among these structural factors.15–22,28 –34 Underserved communities face fınancial barriers as well as barriers of criminalization, discrimination, and concerns about privacy, factors that are important when considering PrEP.14,15 The role of PrEP in addressing health inequities is intertwined with the costs that are attached to the implementation of PrEP, the comparison of the costs with the costs for other forms of preventive services, the cost requirements for the clinical and counseling services for the implementation of this preventive intervention, as well as the potential costs of second- or third-line pharmaceuticals in the case of the development of resistance to fırst-line treatment among those infected while taking PrEP.14,15 In developing dissemination plans for PrEP, a culturally centered approach highlights the structural contexts of inequities, and fosters the development of appropriate www.ajpmonline.org
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strategies that are then directed at addressing the structural loci of the risk of acquiring HIV infection through the participation of community members in consideration of the economic barriers.15,18,21–23,28 –34 The building of community-based comparative effectiveness data is crucial in turning the realms of policy and program decision making into the hands of community members, in collaboration with clinicians, prevention service providers, and other experts.15,16,18,28 –34 The active participation of marginalized community members in advocacy processes is married with strategies for addressing the economic barriers, developing into potential advocacy and activist strategies for securing resources to address the unequal disease burdens faced by the communities.28 –34
Conclusion In considering the effectiveness of PrEP in reducing the risk of acquiring HIV infection, this paper outlines the complex array of factors that must be communicated, such as effectiveness, side effects, treatment costs, and risks in order to be considered within the broader realm of structures and the everyday experiences of individuals, families, and communities in negotiating these structures.15,16,18,28 –34 Engaging communities in processes of decision making, establishing specifıc frameworks for participation and decision making, addressing local cultural contexts through local participation, and addressing the structural inequities underlying HIV/AIDS are suggested as pivotal strategies for considering the preventive role of PrEP in addressing HIV/AIDS among underserved communities in the U.S. Publication of this article was supported by the CDC through the Association for Prevention Teaching and Research (CDCAPTR) Cooperative Agreement number 11-NCHHSTP-01. No fınancial disclosures were reported by the author of this paper.
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