Rodney Rousseau
Rodney Rousseau

After being diagnosed with HIV in 2013, my first round of follow-up bloodwork showed an undetectable viral load, and my CD4 count—a measure of immune health—was above 900/mm3 (typical healthy adults have CD4 counts between 500 and 1200 cells/mm3). I remember my nurse practitioner being surprised enough by the result to request another round of tests to make sure there wasn’t a lab mix-up.

When the second round of tests came back with similar results, that’s when he told me that I might be an elite controller.

Did you know that—at the highest estimate—about 5 percent of people with HIV maintain a normal CD4 count (over 500 cells/mm3) for eight years or more, even in the absence of antiretroviral therapy? Researchers call these people “long-term nonprogressors” since they remain asymptomatic or have a very delayed disease progression over the course of HIV infection. A smaller subset of people with HIV—about 1 percent—successfully suppress viral replication in addition to maintaining higher-than-expected CD4 counts. Elite controllers, as we’re termed, maintain undetectable viral loads even when we don’t take antiretroviral drugs, although some minor viral “blips” have been documented in some individuals.

Some might envy that I’ve been able to escape the daily HIV medications (and their side effects) most people with HIV must fit into their life. But I can’t say that I’ve ever felt long-lasting relief, per se, about my status as an elite controller.

After finding out that I was an elite controller, I felt a lot of confusion. I knew what an elite controller was, but that didn’t translate to knowing what it actually meant to be one. I wasn’t new to the HIV world—I had previously been engaged in community HIV outreach work and intended on pursuing a research career in HIV microbiology—but I felt like I knew nothing about what was going on in my own body.

Rodney Rousseau is a gay man living with HIV completing an HIV immunology graduate degree in Toronto, Canada. He is an activist and engaged community member with a particular interest in the impact of basic and clinical science research and cross-disciplinary understandings of HIV as a complex health issue. He is also an author with PositiveLite.com.

This excerpt is from an essay originally published on the San Francisco AIDS Foundation Beta Blog. To read the complete essay, click here.