Day 3 Recap: 2022 National Ryan White Conference on HIV Care & Treatment

Content From: HIV/AIDS Bureau, Health Resources and Services Administration, U.S. Dept. of Health and Human Services HIV/AIDS BureauPublished: August 26, 20224 min read

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Antigone Dempsey

Thousands of HIV care and treatment leaders, Health Resources and Services Administration’s (HRSA) Ryan White HIV/AIDS Program (RWHAP) recipients and providers, stakeholders, and people with lived experience reconvened virtually for the third consecutive day of the 2022 National Ryan White Conference on HIV Care & Treatment. The theme for Day 3 was “Community Engagement.”

Day 3 Plenary: Community Engagement

The Day 3 plenary session went into greater detail on the goal of emphasizing the foundational principle of the RWHAP: Community Engagement. The session focused on ways that recipients, subrecipients, stakeholders, and people with HIV work to increase health equity, address social determinants of health, and reduce HIV stigma.

The plenary session featured a panel of community leaders, moderated by HRSA’s Special Assistant to the Administrator, Antigone Dempsey, MEd, who began the session by commenting on the three-plus decades of the RWHAP to engage people with lived experience in planning and program development, which is embedded in the RWHAP statute. Dempsey reviewed the HRSA HIV/AIDS Bureau’s most recent work to maximize engagement by the development of its Community Engagement Framework, based on five guiding principles: Intentional; Committed; Sustainable; Flexible and Tailored; and Transformational.

Setting the context for the panel discussion was a presentation by Stacy Smallwood, PhD, MPH, Associate Professor at Georgia Southern University’s Jiann-Ping Hsu College of Public Health. Dr. Smallwood’s framing points were: what is meant by “community;” what is authentic engagement; the types of meaningful involvement and support needed to make this possible; ways to build a culture of engagement; and thoughts on moving forward to make engagement happen.

Dempsey then posed a series of questions to the panelists:

  • Venita Ray, Co-Executive Director of Positive Women’s Network, who turned her attention to empowerment of individuals with HIV after her 2003 diagnosis.
  • Steven Vargas, an HIV Advocate, Long-Term Survivor (27 years), who is a Trainer on the HRSA-funded BLOC (Building Leaders of Color) en Español project.
  • Clover Barnes, MBA, BSN, RN, Senior Deputy Director, at the District of Columbia Health Department, who works to coordinate community engagement on HIV issues for the city health department.
  • Ronald Johnson, Chair of the U.S. People Living with HIV Caucus, who was diagnosed with HIV in 1989.

Of the questions posed to the panel, here’s a sampling of their examples and recommendations:

What inspired your growth as a leader? Being in a supportive environment with other people with HIV; taking part in leadership training; starting out as a volunteer and seeing the impact of AIDS on people’s lives and seeking to provide a greater, and equal, voice for Black and Latino gay men with HIV; the variable influence of clients and staff and others; being open to new perspectives and being accountable for one’s openness; and being there to fill gaps with the voices of people with HIV.

What is essential in supporting and investing in community engagement—money, time, and roles? Making sure you are going into the communities where people with HIV live; being realistic about what one can do as over-committing can damage trust; ensuring continuous engagement versus one-time efforts; providing support (financial and otherwise) that helps people fully participate; being cognizant of what will both support and/or create challenges and involving consumers in the design of engagement efforts in order to anticipate these needs. 

How do you engage a diverse range of voices? Investing in communicating/reaching out to various communities; finding the leaders and connecting with them; putting time into building relationships and trust by seeing what is going on in the community and listening; letting clients know they can bring others into the fold and then being ready to support newcomers; and tapping into the varied interests and needs of diverse audiences (from social settings to being involved in programming in employed positions).

How do you build trust and maintain it? Following up when you say you are going to do something, from providing information to making opportunities available; treating trust as something you build along a continuum; presenting ideas but making clear that a program is being built with community input; communicating clearly and providing feedback; and valuing variable levels and types of input. Ultimately, trust is maintained by enabling empowerment—in sharing decision-making, in leadership, and in being employed in programs.

Reminder: Stay Connected to #NRWC2022

Want to stay connected to the virtual 2022 National Ryan White Conference on HIV Care & Treatment? Follow HRSA on Twitter: @HRSAgov. You can also share which sessions you are enjoying – just use the hashtags #NRWC2022 and #32YearsofCARE.

Reminder: Share Why You CARE

On August 18, HRSA’s HIV/AIDS Bureau recognized the 32nd anniversary of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act – the legislation that created the RWHAP. Help us celebrate by downloading the “I CARE Because...” flyer, print it out, fill it in, and post a picture of yourself with the flyer to our virtual 2022 NRWC Photo Gallery. When posting, please use #32YearsofCARE and #NRWC2022. We will use the images throughout the remainder of the year to highlight how the RWHAP has affected the lives of our stakeholders.

Learn More

Learn more about the Ryan White HIV/AIDS Program and the 2022 NRWC: