The ethical imperative to reduce HIV stigma through community‐engaged, status‐neutral interventions designed with and for transgender women of colour in the United States

Abstract

Introduction In the era of biomedical HIV prevention and treatment technologies, such as treatment as prevention (TasP) and pre‐exposure prophylaxis (PrEP), there is momentum to develop and rigorously evaluate interventions focused on PrEP among those at risk for HIV acquisition and antiretroviral therapy (ART) adherence among people living with HIV. While HIV status‐specific interventions focused on PrEP or ART provide valuable information, status‐segregated interventions can create, perpetuate, and even increase HIV stigma among transgender women of colour and other marginalized communities in the United States (US). Discussion Due largely to community advocacy, discourses that support status‐neutral approaches have emerged in the scientific literature. Although US‐based funding mechanisms have typically designated awards focused on a specific HIV status, intervention developers and implementing agencies find creative ways to design and implement status‐neutral programmes despite such restrictions. We present our experience with intervention research in New York, Detroit, New Orleans, Puerto Rico and the San Francisco Bay Area, all Ending the HIV Epidemic (EHE) priority jurisdictions. Kickin it with the Gurlz’ was developed to be status‐neutral through two grants due to community demands for a unifying approach. The Transgender Women Engagement and Entry to (TWEET) Care Project was designed to improve HIV care engagement for transgender women living with HIV, but developers realized the importance of including participants of any HIV status. Healthy Divas was designed for transgender women living with HIV but subsequent implementing agencies prioritized adapting it to be status‐neutral. These examples support the urgency of designing, implementing and evaluating status‐neutral interventions. Conclusions Community‐based organizations strive for inclusivity in their programming and are rightly often reluctant to segregate services based on the HIV status of their clients. As researchers, we have an ethical imperative to work to reduce HIV stigma and respond to the needs of those most impacted by HIV, including transgender women of colour. As such, we call upon funders to develop mechanisms that support the development and testing of HIV status‐neutral interventions to reduce HIV stigma and support community building, thereby increasing the possibility of fully realizing the benefits of biomedical HIV prevention and treatment technologies for all.

Mapping Community-Engaged Implementation Strategies with Transgender Scientists, Stakeholders, and Trans-Led Community Organizations

“…Integrate and develop gender-affirming care and HIV prevention as part of primary care services to optimize meeting unmet health needs • Integrate PrEP programs with existing state and federally funded Social Determinants of Health (SDOH)-related services and support Social determinants and factors such as housing, employment, income, transportation, education, and health literacy, health-harming legal needs, and insurance play an important role in uptake and maintenance of both gender-affirming care and PrEP [ 57 – 61 ]. Situate gender-affirming and HIV prevention and needs in the context of programs designed to address social determinants of HIV • Employ peer-delivery program structure with trans staff and health care workforce Peer-based health programs have been shown to improve the quality of health service delivery among patients [ 31 , 38 , 61 , 62 ]. Employing trans individuals as part of key workforce personnel (e.g., peer health navigators, providers) has been shown to positively impact quality and retention in health services [ 23 , 29 , 34 , 63 – 65 ] • Bolster organizational and facility capacity to carry out research and data analyses Programs perform best when informed by real-time data.…”

“…This exclusion is due to the pervasiveness of cissexism and cisnormativity that leads to erasure in research and public health programming at-large that researchers-both cis and trans-reinforce and uphold [18, 27••]. Many have begun working to heal relationships between trans communities, HIV research, and scientific communities through community-engaged research and programmatic interventions [28][29][30][31][32][33][34], but much more work is needed [35]. Several trans and nonbinary scientists and community scholars working within spaces of HIV prevention have recurrently advocated for HIV prevention research and programming to be conducted with them across all stages of research development, implementation, and dissemination [17,32].…”

Stigma, social and structural vulnerability, and mental health among transgender women: A partial least square path modeling analysis

“…Despite this gap, hospital systems and community organizations worldwide have adopted varying screening and intervention practices (Ahmad et al, 2017;Alvarez et al, 2017;Perales et al, 2022) Matsuno & Israel, 2018;Takahashi et al, 2020). However, many available evidence-based interventions for TGD people con enter HIV and may only tangentially have an effect on mental health outcomes (Gamarel et al, 2022). Future research should focus on the development and evaluation of mental health focused interventions for TGD people with special attention to the needs of TW of color.…”

What will it take to get to the heart of stigma in the context of HIV?

“…The language used in research may in fact result in practice changes to engage person-centred language in social and healthcare encounters [17]. Several papers in the Supplement include important methodological insights about the cocreation of research and co-production of knowledge, including with marginalized groups (see Brown et al [18], Gamarel et al [19], Tun et al [20] and Collier et al [21]). A partnership model between researchers and marginalized groups in the co-creation of knowledge is increasingly influencing stigma research and is reflected in some of the studies in this Supplement.…”

“…Makoni et al [28] provide examples of the importance of communityled monitoring in promoting accountability and better policy responses that meet the needs of the spectrum of diverse people living with and affected by HIV in Zimbabwe. Gamarel et al's [19] commentary proposes a status-neutral approach for research with trans communities in the United States. The authors argue that although interventions focused on PrEP or antiretroviral therapy uptake and adherence have and will continue to benefit communities, these HIV "statussegregated" interventions can perpetuate HIV stigma and other forms of oppression among those in most need of HIV programmes.…”