Catching Up with the HANC Legacy Project

Since 2009, the Legacy Project at the Office of HIV/AIDS Network Coordination (HANC) has worked to address issues that influence the participation of underrepresented populations in HIV clinical research. The Legacy Project team consists of Russell Campbell, Brian Minalga, Pedro Goicochea, and Tasia Baldwin. Here are a few highlights of what the Legacy Project is up to in 2022!

The Representative Studies Rubric

The NIH-funded HIV/AIDS clinical trials networks are leading the way to ensure that underrepresented populations are included in their research. Black, Indigenous, and Latinx people. Youth, cisgender women, and transgender people. People who inject drugs and people who undergo pregnancy. Too often, these populations are excluded, neglected, or otherwise underrepresented in HIV research. And too often, researchers explain this underrepresentation by characterizing these populations as “hard-to-reach” and “mistrustful.” The HANC Legacy Project’s Representative Studies Rubric (RSR) uproots this narrative by revealing, through evidence-based methodologies, systemic and institutionalized practices within clinical research that perpetuate the exclusion of underrepresented populations.

Created by the Legacy Project in 2021, the RSR is a tool consisting of a 12-item questionnaire designed to identify the extent to which individual study protocols include and exclude underrepresented populations. Led by Brian Minalga, a group of Legacy Project Working Group members performed an RSR analysis of 100% of studies that were enrolling in the ACTG, HPTN, HVTN/CoVPN, IMPAACT, and MTN in September 2021. This analysis identified gaps in inclusion practices that the Networks are working to address. Data generated by this analysis have been presented to Network leadership, who in turn nominated representatives from their respective Networks to join the HANC-facilitated RSR Working Group, with the goal of implementing the RSR as a protocol development tool to ensure that questions of inclusion and representation are considered as early as possible and throughout the protocol development process. In 2022, the Legacy Project is dedicated to supporting the Networks and all their study teams in implementing the RSR as a protocol development tool. Legacy Project activities to support RSR implementation include:

  • Creating Network-specific reports detailing the performance of each study analyzed in 2021 within each of the RSR’s 12 domains
  • Meeting with various teams within each of the Networks to present data from the 2021 RSR analysis and support forward-looking implementation
  • Facilitating cross-Network RSR Working Group meetings to strategize and harmonize RSR implementation
  • Expanding the reach of the RSR to our partners, collaborators, and colleagues by presenting the RSR at conferences such as the International Workshop on HIV & Women and AIDS 2022.

The NIH-funded HIV/AIDS clinical trials networks exemplify dedication to inclusion and representation in HIV research conducted around the world. The Legacy Project team is proud to support the Networks in achieving their mission to end the HIV epidemic—for all.

Podcast

H=H, the H is for Human, the podcast that centers on the human in HIV

H=H is produced by the Legacy Project with the purpose of delivering content on HIV research education, affirming Black, Indigenous, and other People of Color (BIPOC) and sexual gender minority communities disproportionately impacted by HIV. H=H was launched on November 1, 2021, and six episodes have been aired:

  • Episode 1: The H is for Human. This episode introduces the Office of HIV/AIDS Network Coordination (HANC), the Legacy Project and working groups, the Division of AIDS (DAIDS) and the HIV/AIDS research networks.
  • Episode 2: World AIDS Day. In observance of World AIDS Day, this episode includes interviews with HANC Director, Jeff Schouten, and HIV/AIDS research networks leaders: Judy Currier (ACTG), Wafaa El-Sadr and Myron Cohen (HPTN), Georgia Tomaras (HVTN), and Sharon Nachman (IMPAACT).
  • Episode 3: A conversation with Dr. Carl Dieffenbach.  In this first episode of 2022 Dr. Jeff Schouten, HANC Director, interviews Dr. Carl Dieffenbach, the Director of the Division of AIDS of the National Institutes of Health. 
  • Episode 4: The health of transgender people.  Transgender people are one of the groups most impacted by the HIV epidemic.  Episode 4 is devoted to the health of transgender people with interviews with Jessica Xavier and Maria Roman-Taylorson.
  • Episode 5: Transgender women’s health research.  This episode is devoted to research being conducted with transgender women in the context of the Division of AIDS (DAIDS) research agenda. Rona Siskind discusses how DAIDS approaches research pertaining transgender people, and doctors Tonia Poteat and Jordan Lake discuss their studies.
  • Episode 6: Latinx & HIV. The National Latinx Conference on HIV/HCV/SUD. This episode reports on the 2022 Latinx Conference on HIV/HCV/SUD March, Albuquerque, NM.  We interview Pedro Coronado, conference director, Jose Romero on Language Justice, Miguel Chion on training HIV health care providers during the COVID-19 epidemic, and Daniel Roque about the National Hispanic/Latinx Health Policy Agenda 2022-2024 released by the Latino Commission on AIDS.

The President’s Advisory Council on HIV/AIDS (PACHA)

PACHA’s Subcommittee on Stigma and Disparities invited the Legacy Project to participate in a meeting that will generate US national recommendations on HIV cluster detection and response (CDR) activities. CDR involves identifying and responding to HIV transmission patterns through a process called molecular HIV surveillance (MHS), in which the genetic relatedness of HIV in many different people is used to monitor different HIV strains. Brian Minalga is the Legacy Project’s resident expert in CDR/MHS ethics and community engagement, having presented at various conferences and published several journal articles on the topic. The ethics of HIV genetic sequencing and related activities are relevant to the NIH-funded HIV/AIDS clinical trials networks, which perform HIV genetic sequencing in some studies (with the consent of participants, as required in all aspects of clinical research). Brian traveled to Atlanta for this meeting, which took place May 9-10.

Be the Generation to End the HIV Epidemic

Having led to the approval of pills, rings, and shots that prevent HIV transmission, biomedical HIV prevention research has never held more promise to end the HIV epidemic. But if we aren’t working to end the HIV epidemic for all, then we’re not really working to end the HIV epidemic. People who are underrepresented in HIV prevention research are also underrepresented among those who benefit from biomedical HIV prevention tools. The Legacy Project’s Be the Generation (BTG) initiative is working to ensure that underrepresented populations have the opportunity to engage in HIV prevention research. Here’s how we’re supporting this generation to be the generation to end the HIV epidemic:

  • BTG website: the place to go online for information on biomedical HIV prevention research focused on PrEP, U=U, microbicides, and vaccine research
  • BTG newsletter: the Legacy Project’s quarterly newsletter bringing the latest in biomedical HIV prevention research to the community (sign up by emailing bminalga@fredhutch.org)
  • BTG trainings: comprehensive training modules that you can download to hold a training in your community on biomedical HIV prevention research—or invite the Legacy Project to do a training for you!
  • Historically Black Colleges and Universities (HBCU) initiative:
    • Russell Campbell attended and presented the HIV Prevention Research module (HPR Module) as part of the Duke CFAR Diversity, Equity, and Inclusion Pipeline Initiative (CDEIPI) at Vorhees University and South University. The program is entitled, “Evidence2Practice” (E2P), and it focuses on leveraging implementation science to recruit HBCU/MSI students into careers in HIV research. E2P is an intensive on-campus workshop-based initiative, anchored by the HPR Module, with the goal of increasing student interest in careers in HIV science, through providing an experience-based introduction to implementation science.
    • Russell Campbell and Tasia Baldwin are working with and providing expertise to the Black AIDS Institute (BAI) on the Health Resources & Services Administration - HIV/AIDS Bureau’s (HRSA/HAB) $8 million grant for a biomedical justice initiative. This four-year project led by BAI, in partnership with Cardea and the Legacy Project, aims to develop a national training program for students from HBCUs to expand and diversify a strong pipeline of HIV advocates and leaders equipped to end the HIV epidemic.
    • Tasia Baldwin will facilitate the newly formed Legacy HBCU/MSI Working Group. The purpose of the group is to provide guidance and input on activities related to engaging HBCU/MSI students and staff focused on increasing scientific literacy of the communities most disproportionately impacted by HIV through the utilization of the HPR Module. WG members will:
      • Serve as subject matter experts
      • Review materials and trainings and provide input and feedback on efforts to engage HBCU/MSI students and staff
      • Conduct presentations on HIV and HIV prevention research efforts to audiences using content from the HPR module
      • Meet as part of ad hoc calls

National Latinx Conference on HIV/HCV/SUD, Biomedical HIV Prevention Summit & Upcoming Appearances

Legacy Project conducted the workshop, “Community Involvement in HIV Prevention Clinical Research” at the 2022 National Latinx Conference on HIV/HCV/SUD in Albuquerque, New Mexico with over 60 participants. 

The Legacy Project team recently returned from Chicago, IL, where they reached over 300 conference participants with workshops at the Biomedical HIV Prevention Summit:

  • No Data No More: Manifesto to Align HIV Prevention Research with Transgender and Gender-Diverse Realities
  • Role of Pharmacists along the HIV Prevention and Treatment Continuum
  • Long-Acting Antiretroviral Injectables and Broadly Neutralizing Antibodies - What's New?
  • Addressing “Addictophobia” to Engage MSM Who Use Drugs in PrEP

Russell, Brian, Pedro, and Tasia hope to see you soon! Here are some dates and places where you can catch up with them:

Always: Russell Campbell, rcampbel@fredhutch.org

               Brian Minalga, bminalga@fredhutch.org

               Pedro Goicochea, pgoicoch@fredhutch.org

               Tasia Baldwin, tbaldwin@fredhutch.org

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