Short Communication: Population Representation in HIV Cure Research: A Review of Diversity Within HIV Cure Studies Based in the United States.

HIV is experienced across diverse populations, with gender and racial/ethnic minority populations bearing a significant proportion of disease. With National Institutes of Health (NIH) placing a priority on the enrollment of women and racial/ethnic minorities into studies, it is important to understand the diversity of participants in research. We sought to characterize how HIV cure research studies report data on diversity. A sampling frame of publications with funding provided by the Martin Delaney Collaboratories for HIV Research in 2019 was reviewed for reporting of demographic data. Of 55 publications that included research on humans/human specimens, only 51% provided any demographic description. There often is insufficient consideration of diversity of populations in HIV cure research. Ameliorating gaps in this regard will require recruitment of diverse populations/specimens and specifications to report demographic data in articles. This will ensure inclusion of diverse participants in HIV cure research from earliest laboratory to eventual phase III studies.

Time for revolution? Enhancing meaningful involvement of people living with HIV and affected communities in HIV cure-focused science.

INTRODUCTION: Involving affected communities and people living with HIV (PLHIV) in HIV cure-focused clinical trials has ethical and practical benefits. However, there can be barriers to meaningful involvement of 'lay people' in scientific research meaning community consultation is often limited or tokenistic. This paper reports on an Australian project, the INSPIRE project (Improve, Nurture and Strengthen education, collaboration, and communication between PLHIV and Researchers), which aimed to explore barriers and enablers to enactment of the principles of meaningful involvement of PLHIV (MIPA) and affected communities in HIV cure-focused research. METHODS: The project involved a workshop attended by 40 stakeholders involved in HIV care, research or advocacy including PLHIV, community organizations, basic scientists, and clinicians. The workshop involved a facilitated discussion about community involvement in a hypothetical HIV cure-focused clinical trial. Data were collected through notetaking and video recordings. Qualitative, thematic analysis was undertaken to organize the data and identify core themes related to MIPA. RESULTS: Workshop discussions revealed community stakeholders often feel their involvement in HIV clinical research is undervalued, evidenced by limited financial remuneration and minimal capacity to influence the research design or processes. Building long-term, formal and informal relationships between community organizations, PLHIV, researchers and research teams or laboratories was identified as a strategy to support MIPA at all stages of a clinical trial, from design to dissemination of findings. CONCLUSIONS: Enacting MIPA principles in HIV cure-focused research requires a better understanding of the potential to improve research outcomes and ensure quality in the research process.

Using HIV Surveillance Data for Targeted, Community-based Hepatitis C Virus Testing among Baby Boomers in Washington, D.C.

Community-based hepatitis C virus screening can identify individuals who are unaware of their infection and not regularly engaged in care. We report on a pilot study exploring the utility of using HIV surveillance data to identify targeted, geographical areas with high HIV prevalence and poor care indicators for screening baby boomers at risk for HCV. Between August-September 2014, we conducted community-based HCV rapid testing in high-risk census tracts. Eligible participants were born from 1945-1965 and not currently engaged in HCV care. Overall, 30% were HCV-antibody positive, 34% had a medical visit in the past year and among those with a medical visit, 75% had never been HCV-tested before. Using HIV surveillance data for targeted, community-based HCV testing yielded a high prevalence of untreated HCV cases. A large proportion had never been HCV-tested, suggesting this testing paradigm may be effective in reaching individuals at risk for HCV in a community-based setting.

Fighting HIV/AIDS in Washington, D.C.

Washington, D.C., is the capital of the United States and is a major center for public health and health policy expertise. Yet the District of Columbia has an HIV prevalence rate among adults of 3 percent, on par with some sub-Saharan African countries. To date, the local public health response has not controlled the epidemic. The ways in which that response has been galvanized in recent years--through collaboration among the capital's public health agencies, community and faith organizations, and research institutions--may be instructive to other jurisdictions combating HIV/AIDS.

The Exchange coalition--identifying and addressing structural factors affecting HIV prevention in African American women on a national basis.

INTRODUCTION: From 1992 to 2002, African American women accounted for almost 70% of all newly diagnosed cases of HIV among women (CDC, 2002). Systemic issues such as poverty, domestic violence, mental illness, and limited access to culturally competent HIV/ health care services facilitate high infection rates among these women (OMH, 2005) and render many prevention/treatment messages ineffective. In response, Community Education Group (CEG) formed "The Exchange"-a national advocacy group comprised representatives from various organizations and agencies. To inform the groups formation CEG conducted a formative survey at three conferences to assess interest and need of such a group. METHODS: Using a convenience sample, CEG surveyed care providers, health specialist, and social/behavioral scientists from various organizations at three conferences about: (1) primary issues facing African American women at risk of and living with HIV/AIDS, (2) their interest in building a coalition with organizations with differing foci, and (3) what they believe to be the top health issues facing these women. RESULTS: Of the 1,186 surveys, 96.7% believed a coalition would provide effective advocacy, 77.3% were willing to build a coalition, and the top three issues affecting rates of infection were health care (62.8%), access to affordable treatment (50%) and unknown partner risk (47%). CONCLUSION: Survey respondents felt that a coalition of organizations with differing foci to address the systemic conditions of African American women is needed if we are to have an effect on their rates of HIV/AIDS.