In the next installment of the new Health Equity Series, Oni J. Blackstock, MD, MHS, outlines key practices and strategies to continue the work of health equity, drawing on the history of HIV.
During uncertain times, like the current moment, we can either retreat or move forward and plant seeds of change. This moment calls on us to plant seeds.
Communities affected by HIV have always organized, created and imagined ways forward. This irrepressible history, which includes the AIDS Coalition to Unleash Power (ACT UP) and the AIDS Counseling and Education Program, can guide us now. We are living through a moment when the values that have driven collective social progress, in many spaces, have been rendered off-limits. HIV research and development is paused or defunded. Public health institutions face deepening disinvestment. Transgender, immigrant and other marginalized communities are navigating increasingly hostile policies and conditions.
This cycle of hard-won progress followed by retreat and pushback is familiar. Yet, being grounded in the history of the HIV movement, along with practical tools and strategies, offers direction when the path ahead seems uncertain.
A useful framework from Race Forward, a leading racial justice organization, includes four essential practices: organize, normalize, operationalize and visualize. (1)
Organize
Organizing moves ideas to coordinated action through collaboration, advocacy and collective strategy. Whether you are convening colleagues for strategy, exchanging texts after a policy change or gathering voices in a shared space, organizing reminds us we are part of something larger than ourselves. Joining organizations like IDSA and HIVMA is one way to connect with others advancing health equity in infectious diseases and HIV.
Normalize
Health equity is being challenged and pushed aside across many institutions and organizations. It’s important to normalize challenging dominant narratives that say focusing on health equity isn’t necessary, or worse, that it is divisive or harmful. The ACT model, developed by Race Forward, provides a structure for navigating these moments. (1)
For example, in a program planning meeting, someone may say:
“We need to focus on what’s feasible and measurable. Talking about equity slows things down.”
You can use ACT to respond with clarity and purpose:
- Affirm shared values to ground the conversation: “I agree that feasibility and impact are important. We all want the program to succeed.”
- Counter with relevant context and what’s missing: “At the same time, leaving out health equity means we’re missing key factors that affect how and whether people can access care.”
- Transform the frame to position health equity as essential: “When we center health equity from the start, we’re increasing our impact and ensuring everyone benefits.”
Operationalize
Operationalizing is about putting our commitment to health equity into action via policies, practices and decision-making. Race Forward’s “Choice Points” framework identifies decision-making opportunities, big or small, where we can align our values with our actions (2). Each of us has a sphere of influence, whether it be in hiring, funding, agenda-setting, outreach, internal processes or something else. Find what’s in your control. When you’re at a choice point, pause and ask yourself, “How can I make this decision one that moves us closer to health equity?”
When we identify and respond to our choice points, consistently and collectively, we start to shift culture, policy and practice. These small shifts can have a powerful cumulative effect.
Visualize
A clear vision keeps us rooted and focused on health equity.
Picture your community in 2030. Health equity in HIV has been achieved.
What does that look like? Who feels safe? Who holds power and resources? What does access to prevention and care feel like for people who were once left out? Which systems were transformed to get there?
A hidden, but important, piece of HIV history may help to make this vision even clearer and more urgent.
In 1969, a 16-year-old Black teenager named Robert Rayford died in St. Louis, Missouri. At the time, his doctors did not understand what he was experiencing. Two decades later, researchers confirmed that Robert had died of advanced HIV disease (3), more than a decade before the first case reports in the MMWR of what would later be called acquired immunodeficiency syndrome, or AIDS. (4)
Robert lived on Delmar Boulevard, a street still known today for dividing St. Louis by race, wealth and health outcomes. Black residents north of Delmar experience life expectancies nearly 20 years shorter than their white neighbors to the south. (5) Little else is known about Robert other than that he was likely intellectually disabled. While Robert’s story remains largely concealed, it tells us something profound — that health equity demands that we build systems designed for care, not exclusion, and that we understand stories like Robert’s as structured outcomes, not tragic exceptions.
The work of health equity continues. Your actions matter. Whether you are convening colleagues to align strategy (organize), naming and speaking to the importance of health equity in a meeting (normalize), rethinking a meeting structure to make it more equitable (operationalize) or inviting others to envision what achieving health equity in HIV looks like (visualize), these acts are not small. They build the world we need. Every seed counts.
Learn more about the Health Equity Series on Science Speaks and read other posts in the series.
References
- Rudiger, A. (n.d.). Advancing Racial Equity: A Framework for Federal Agencies. Race Forward.
- Race Forward. (n.d.). Creating cultures and practices for racial equity [PDF].
- Garry, R. F., Witte, M. H., Gottlieb, A. A., Elvin-Lewis, M., Gottlieb, M. S., Witte, C. L., Alexander, S. S., Cole, W. R., & Drake, W. L., Jr. Documentation of an AIDS virus infection in the United States in 1968. JAMA. 1988;260(14):2085–2087.
- Centers for Disease Control and Prevention. Pneumocystis pneumonia-Los Angeles. Morbidity and Mortality Weekly Report. 1981;30(21):1–3.
- Washington University in St. Louis & Saint Louis University. (2015). For the sake of all: A report on the health and well‑being of African Americans in St. Louis-and why it matters for everyone [PDF].