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. Author manuscript; available in PMC: 2021 Sep 18.
Published in final edited form as: Womens Health Issues. 2021 Jun 24;31(5):415–419. doi: 10.1016/j.whi.2021.05.003

No Longer the Exception, but the Standard: Integrating Trauma-Informed Policy and Pre-exposure Prophylaxis Implementation for Women

Tiara C Willie a,*, Kamila A Alexander b, Trace Kershaw c, Jacquelyn C Campbell b, Jamila K Stockman d
PMCID: PMC8448947  NIHMSID: NIHMS1727180  PMID: 34175198

Almost four decades into the national HIV/AIDS epidemic, women remain significantly impacted. Heterosexually active women are a key population targeted in national HIV prevention efforts (Short, Sutton, Luo, & Frazier, 2019). In 2018, women represented 19% of all new HIV diagnoses in the United States. Among heterosexual women, unprotected condomless vaginal and/or anal sex with a male partner is the primary mode of HIV transmission and accounts for 85% of HIV diagnoses among women (Centers for Disease Control and Prevention, 2017a). Black women experience the highest burden of HIV infections; 57% of new HIV diagnoses among women were Black women (Centers for Disease Control and Prevention, 2017a), although they represent only 12.9% of all women in the U.S. population (U.S. Census Bureau, 2020). Behavior alone does not fully account for the increased risk of HIV for Black women; sociocultural context also plays a role (Aholou, Murray, & Sutton, 2016; Sharpe et al., 2012; Wyatt et al., 2013).

The South has the highest rates of HIV diagnoses, where Black women account for 69% of HIV diagnoses among women (Centers for Disease Control and Prevention, 2017b). The U.S. Plan for Ending the HIV Epidemic (Fauci, Redfield, Sigounas, Weahkee, & Giroir, 2019) addresses these geographic disparities by targeting resources to the 48 highest burden counties, Washington, DC, San Juan, Puerto Rico, and 7 states with a substantial HIV burden (Fauci et al., 2019). However, there remains an urgent need for effective HIV prevention policies, interventions, and programs that address the sociocultural context of women’s lived experiences.

Intimate Partner Violence and HIV Acquisition Among Women

Intimate partner violence (IPV), defined as physical, sexual, or psychological abuse between romantic or sexual partners (Breiding, 2015), constrains women’s access to and engagement in HIV prevention practices. In the United States, more than one-third of women (37.3%) report at least one form of IPV in their lifetime (Black et al., 2011). Compared with women without these experiences, women in physically and sexually abusive heterosexual relationships are more likely to be diagnosed with HIV (Li et al., 2014; Maman, Campbell, Sweat, & Gielen, 2000; Prowse, Logue, Fantasia, & Sutherland, 2014; Sharps, Njie-Carr, & Alexander, 2019). There are several direct and indirect pathways linking IPV experiences with women’s greater risk of HIV acquisition (Dunkle & Decker, 2013; Stockman, Lucea, & Campbell, 2013). For example, forced or coercive sexual intercourse, especially forced anal intercourse with an abusive male partner who is HIV positive, can lead to HIV acquisition (Stockman et al., 2013). The psychological sequalae of IPV can make it hard to negotiate safe sex practices (Dunkle & Decker, 2013). Women experiencing IPV may also fear violent retaliation or abandonment without resources from a partner if they raise the topic of safe sex practices (Overstreet, Willie, Hellmuth, & Sullivan, 2015; Teitelman, Ratcliffe, Dichter, & Sullivan, 2008). Finally, the physiological effects on the immune system from the stress of abuse plus the increased permeability of the vaginal wall to the HIV virus from local inflammation from other STIs that are often a result of an abusive relationship all result in increased susceptibility of abused women to HIV (Campbell et al., 2013; Tsuyuki et al., 2019).

Policy improvements that change the structural environment could alter the relationship between IPV and HIV among women. One study found that the positive association between IPV prevalence and HIV diagnoses among women was attenuated in states with more trauma-informed policies in place when compared with states with fewer policies (Willie, Stockman, Perler, & Kershaw, 2018). In this study, researchers highlighted that trauma-informed health care environments facilitate appropriate identification of women experiencing IPV and can respond to their needs in a sensitive manner, thus weakening the association between IPV prevalence and HIV diagnoses. Women experiencing IPV are navigating their HIV prevention strategies within the context of violence, trauma, and gender-based constraints (Lang & Bird, 2015). Thus, there is a critical need for increased education, promotion, access, and adoption of partner-independent HIV prevention.

Pre-exposure prophylaxis (PrEP) has the potential to be a partner-independent HIV prevention strategy for women experiencing IPV; however, this vision has yet to be fully actualized. In 2012, the U.S. Food and Drug Administration approved PrEP, a once-daily oral medication, for heterosexual women and men, men who have sex with men, and people who inject drugs, all of whom are at substantial risk for HIV acquisition (U.S. Food and Drug Administration, 2012; U.S. Public Health Service, 2014). PrEP decreased HIV infection among high-risk individuals up to 92% (U.S. Public Health Service, 2014). Health care providers can assess candidacy for PrEP according to the clinical guidelines established by the Centers for Disease Control and Prevention (U.S. Public Health Service, 2014). Individuals who use PrEP must commit to taking the drug every day and visiting their health care provider for follow-ups every 3 months. An exception to this process is in effect in California, where California Senate Bill 159, approved in 2020 to expand PrEP access, authorizes pharmacists to dispense PrEP without a prescription, which eliminates mandatory doctor visits and bars insurance companies from requiring prior authorization for PrEP (Equality California, 2019). Despite this innovation, national epidemiological trends suggest important gender-, racial-, and geographic-related PrEP disparities. Only 7% of national PrEP users are women, PrEP use is significantly lower among Black women than White women, and PrEP use is the lowest in the South compared with other regions (Bush, Ng, Magnuson, Piontkowsky, & Mera Giler, 2015). A study found that the CDC clinical guidelines disqualify women engaged in heterosexual contact at significant proportions (Calabrese et al., 2019) that, coupled with low PrEP awareness among women (Auerbach, Kinsky, Brown, & Charles, 2015; Flash et al., 2014; Goparaju et al., 2017), can result in ineffective PrEP uptake for women, specifically women experiencing IPV.

The Usefulness of PrEP for Women Experiencing IPV

Women experiencing IPV need partner-independent HIV prevention methods (Braksmajer, Leblanc, El-Bassel, Urban, & McMahon, 2019; Braksmajer, Senn, & McMahon, 2016; Willie, Kershaw, Campbell, & Alexander, 2017a; Willie, Keene, Kershaw, & Stockman, 2020; Willie et al., 2019; Willie, Stockman, Overstreet, & Kershaw, 2017b). PrEP does not require the same type of interpersonal negotiation with a sexual partner in comparison with condoms. Also, unlike condoms, women can take PrEP independent of the sexual encounter, which is critical for women experiencing IPV who may not have control over when sexual intercourse occurs (Braksmajer et al., 2019; Braksmajer et al., 2016). Women experiencing IPV are interested in PrEP (Rubtsova, Wingood, Dunkle, Camp, & DiClemente, 2013; Wingood et al., 2013), but clinicians rarely screen for IPV routinely (Rabin, Jennings, Campbell, & Bair-Merritt, 2009), and CDC guidelines for PrEP do not include IPV as a criterion (Willie et al., 2020; Willie et al., 2019); therefore, most providers likely lack protocols for the assessment and continued care of women experiencing IPV who may be eligible PrEP candidates. Possibilities for offering PrEP in domestic violence shelters have been explored but have met obstacles, especially in terms of lack of resources and official guidelines for implementation (Cavanaugh, Harvey, Alexander, Saraczewski, & Campbell, 2021).

Trauma-Informed Policies and Approaches in PrEP Implementation for Women

We argue for the integration of trauma-informed policies with PrEP implementation and delivery for women, especially women experiencing IPV. Trauma-informed policies are rooted in principles of trauma-informed care (Bowen & Murshid, 2016; Substance Abuse and Mental Health Services Administration, 2014), which is grounded in four assumptions. Trauma-informed approaches assume that all individuals within organizations and systems 1) realize that trauma can affect individuals, families, and communities, 2) recognize the signs of trauma, 3) respond to trauma, and 4) resist retraumatizing clients and staff through organizational practices (Substance Abuse and Mental Health Services Administration, 2014). Furthermore, trauma-informed approaches exemplify strong adherence to six core principles (i.e., safety; trustworthiness and transparency; peer support; collaboration and mutuality; empowerment, voice, and choice; and cultural, historical, and gender issues). We recommend ways for PrEP implementation and delivery to incorporate each of these principles to better serve women experiencing IPV.

Safety

Trauma-informed approaches create environments that facilitate individual feelings of physical and psychological safety (Machtinger et al., 2019; Substance Abuse and Mental Health Services Administration, 2014); therefore, policies should make provisions for women experiencing IPV to be safe when considering PrEP candidacy. First, the CDC PrEP clinical guidelines should be revised to include IPV as a criterion, such that all PrEP-prescribing providers and settings should institutionalize routine screening for IPV. In addition to routine IPV screening, standard safety protocols should be in place, especially in the event that IPV is disclosed. For example, women should be alone with their health care provider during IPV screening and discussions about personal relationships. Clinic-level policies can prevent partners from being in the examination room during these conversations to allow women to discuss relational dynamics without fear of retribution. Also, for staff safety, de-escalation protocols can mitigate controlling partner behaviors. Furthermore, safety planning can improve women’s safety while adhering to PrEP and attending subsequent medical appointments. Safety protocols should be implemented in tandem with violence-specific agencies and services within local communities.

Trustworthiness and Transparency

Trustworthiness and transparency require organizational honesty and openness regarding how operations and decisions are made (Substance Abuse and Mental Health Services Administration, 2014). Trustworthiness and transparency can be accomplished during patient-provider conversations regarding healthy relationships and routine IPV screening. Patient–provider conversations should clearly communicate the limits of confidentiality and privacy (e.g., providers explaining what can be kept confidential). Organizations should also be knowledgeable about changes in state-level mandates regarding IPV. Also, providers should clearly communicate why clinicians should engage in conversations about healthy relationships and IPV prevention during PrEP candidacy assessments. Transparency in information-sharing includes education about both potential risks and benefits of PrEP use, such as the possibility of nausea (or other side effects) and the fact that PrEP is one of the only HIV prevention options that women can use prior to sexual intercourse. Furthermore, although IPV is not yet part of the PrEP candidacy guidelines, organizations should recognize that it is an important risk factor to consider for women’s health.

Peer Support

To promote recovery and healing from trauma, peer supports can build trust and collaboration and instill hope among individuals (Substance Abuse and Mental Health Services Administration, 2014). The PrEP navigator model has been successfully implemented in real-world settings (Blackstock et al., 2020; Parisi et al., 2018; Saberi, Ming, Scott, Liu, & Steward, 2020). Broadly defined, PrEP navigators are “auxiliary, non-prescribing providers whose role is to assist people in overcoming structural barriers to care” (Mugavero, Amico, Horn, & Thompson, 2013; Pinto, Berringer, Melendez, & Mmeje, 2018). Similar to community health workers, PrEP navigators can be trusted members of and liaisons to the communities they serve. A peer PrEP navigator trained in trauma-informed approaches with IPV experiences could provide relationship-based HIV counseling, offer PrEP education, and support women as they engage in PrEP persistence and retention in care. Federal funding supporting the Ending the HIV Epidemic initiative should be leveraged to hire, support, and retain trauma-informed PrEP navigators. Furthermore, state-level PrEP navigation training programs should be trauma informed.

Collaboration and Mutuality

Collaboration and mutuality in a trauma-informed approach recognizes that every individual involved in the organization (e.g., clinical staff, clients, nonclinical staff) is accountable and has an important role in ensuring that trauma-informed practices are enacted (Substance Abuse and Mental Health Services Administration, 2014). Women experiencing IPV may enter the health care system through multiple points (e.g., emergency room, mental health treatment, substance use treatment) and not necessarily with concerns regarding HIV prevention. For example, women may engage with nonclinical staff members during check-in and/or even in the hallway to ask for directions to the department of choice. As such, it is paramount that cross-department collaborations are built on a shared understanding of trauma-informed care. For example, to resist retraumatization, women who are referred for HIV prevention services of an organization from the mental and behavioral health department should not have to repeat their trauma histories during the PrEP candidacy assessment. Furthermore, as more states consider expanding PrEP access through PrEP-prescribing pharmacists, trauma-informed care should be promoted in these settings as well. Organizations might find it useful to do warm hand-offs to community-based agencies that adhere to trauma-informed principles.

Empowerment, Voice, and Choice

A trauma-informed approach not only recognizes how trauma can affect the lives of staff and clients, but also builds upon individuals’ strengths to support their resilience, healing, and recovery (Substance Abuse and Mental Health Services Administration, 2014). Organizations can ensure survivors are represented and actively engaged during program development for women experiencing IPV. Survivors have keen insights about potential challenges but also about facilitators of PrEP uptake, persistence, and retention; thus, they can be critical sources of information when developing programs and interventions. Promoting autonomy among women during the PrEP decision-making process is critical to successful programming. Shared decision aid tools can help women to assess HIV risks and explain potential HIV prevention options (Qin et al., 2020). Providers should consider incorporating such tools into patient-provider conversations during PrEP education and counseling.

Cultural, Historical, and Gender Issues, or Intersectionality

The last principle of a trauma-informed approach emphasizes that organizations and staff recognize historical trauma and be responsive to multiple identities based on race, ethnicity, gender, sexual orientation, and other attributes (Substance Abuse and Mental Health Services Administration, 2014). This principle can be conceptualized according to the theories of intersectionality and constrained choice. As other trauma-informed policies have noted (Bowen & Murshid, 2016), intersectionality is a theoretical framework indicating that individuals are disadvantaged by multiple interlocking sources of oppression (e.g., racism, sexism) (Bowleg, 2012; Collins, 2002; Crenshaw, 1990). Thus, taking into account individuals’ multiple, overlapping identities at the microlevel is key to understanding the types of stress, discrimination, and prejudices they encounter (Lewis, Williams, Peppers, & Gadson, 2017; Seng, Lopez, Sperlich, Hamama, & Meldrum, 2012). Similarly, the constrained choice theory (Bird & Rieker, 2008) discusses the ways in which policies that are not necessarily health-related can have unintended impacts on health outcomes. Lang and Bird (2015) integrated intersectionality with constrained choice theory to illustrate how inhabiting multiple disadvantaged statuses can manifest as cumulative constraints that limit opportunities for health equity. In particular, Black women are socially located within multiple systems of oppression (e.g., gendered racism) and PrEP programs and interventions need to attend to their unique experiences. The historical context of unethical medical research and practices against Black communities (e.g., the Tuskegee syphilis study; coerced sterilization) has created a culture in which health care practices reinforce discrimination (Williams & Mohammed, 2013), resulting in a deep level of medical mistrust (LaVeist, Nickerson, & Bowie, 2000). Medical mistrust is related to fewer positive PrEP attitudes and intentions among Black women (Nydegger, Dickson-Gomez, & Ko, 2021; Tekeste et al., 2018). Using trauma-informed approaches with an intersectional lens not only ensures that staff are knowledgeable about historical contexts, but actively engages in patient-provider discussions that recognize how this history might be an important driver of PrEP deliberation or rumination among Black women. For example, Black women’s experiences of historical trauma (e.g., trauma owing to racist police brutality) may foster a deep sense of mistrust in the criminal legal system and reduce women’s interest in obtaining protection orders to leave an abusive relationship (Bent-Goodley, 2007; 2009; Kasturirangan, Krishnan, & Riger, 2004). Institutional racism and racialized stereotypes have also portrayed Black women as undeserving of resources to help them leave and heal from abusive situations (Gillum, 2002; Taft, Bryant-Davis, Woodward, Tillman, & Torres, 2009; West, 2004, 2018), and Black women may face discrimination when seeking social services related to violence (Nnawulezi & Sullivan, 2014). Therefore, staff engaged in trauma-informed approaches for PrEP implementation should be trained to recognize the many barriers Black women experiencing IPV encounter when they seek help.

Conclusions

Trauma-informed HIV prevention, treatment, and care is a well-established area of research and public health practice, but in most places PrEP-related practice does not yet fully reflect the latest evidence. Despite this dearth of research and practice, several emerging studies have elucidated significant and important relationships between IPV experiences and PrEP-related outcomes among women at-risk for HIV acquisition (Braksmajer et al., 2019; Braksmajer et al., 2016; Willie et al., 2017a; Willie et al., 2020; Willie et al., 2019; Willie et al., 2017b). As states expand access to PrEP, trauma-informed principles should be considered in PrEP delivery and implementation across settings (e.g., clinics, pharmacies, and other entities). Overall, integrating trauma-informed policies and approaches into PrEP services to promote partner-independent HIV prevention is the first and critical step toward achieving women-specific HIV prevention and risk reduction goals outlined in the 2020 National HIV/AIDS Strategy and the U.S. Plan to Ending the HIV Epidemic.

Acknowledgments

Funding for this research was provided by the National Institute of Mental Health (NIMH) via R25MH083620. T.C.W. was supported by the National Institute on Minority Health and Health Disparities (NIMHD) via K01MD015005 and the National Institute on Drug Abuse (NIDA) via R25DA035692. This work was also supported by The Johns Hopkins Center for AIDS Research (P30AI094189) and San Diego Center for AIDS Research (P30AI036214).

Biographies

Tiara C. Willie, PhD, MA, Assistant Professor of Mental Health, Johns Hopkins Bloomberg School of Public Health, examines the etiology and health consequences of gender-based violence among populations at risk or currently experiencing violence with an emphasis on HIV prevention.

Kamila A. Alexander, PhD, MPH, RN, Assistant Professor, Johns Hopkins School of Nursing, focuses on preventing sexual health outcome disparities and the complex roles that structural determinants (intimate partner violence, societal gender expectations, and limited economic opportunities) play in intimate human relationships.

Trace Kershaw, PhD, is Professor of Public Health at the Yale School of Public Health. His research examines social and structural influences of sexual health, substance use, and mental health among adolescents and emerging adults.

Jacquelyn C. Campbell, PhD, RN, is a Professor at Johns Hopkins University School of Nursing. She is well known for her research, advocacy and policy work in the field of violence against women and women’s health with more than 300 publications.

Jamila K. Stockman, PhD, MPH, Associate Professor, Division of Infectious Diseases and Global Public Health, University of California, San Diego School of Medicine, conducts HIV research in the context of gender-based violence, substance use, mental health, and social/structural factors affecting marginalized populations.

Footnotes

The authors declare no conflicts of interest.

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