Switch On Your HIV Smarts.

Life as an Elite HIV Controller

, by Rodney Rousseau

RR_photoAfter 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% 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%—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-say, 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.

I wanted to start on antiretroviral therapy (ART) immediately. I wanted to be proactive, so that I could feel in control of my own health.

When I was told there wasn’t really any compelling reason for me to start ART, I had mixed feelings. I was relieved to not have to take one or two or five pills a day. But I also felt an absence of control over my own circumstance. How was I supposed to take care of myself? Wasn’t there anything I could do?

I also started to find out that being an elite controller, and not having to take antiretrovirals, may come at a price. Despite an ability to suppress HIV replication, elite controllers often experience chronic immune activation and inflammation over and above levels experienced by people with HIV who control their viral loads with ART. While the cause of this inflammation is not yet well understood, it is linked to all kinds of health problems such as neurocognitive conditions and cardiovascular disease.

One study showed that elite controllers have higher hospitalization rates for cardiovascular disease than people taking antiretroviral therapy who are virally suppressed and people taking antiretroviral therapy with detectable viral loads. Cardiovascular events were found to be the cause of about 30% of hospital admissions for elite controllers—but less than 15% for people taking antiretrovirals.

I’m only in my mid-twenties and I’ve started to worry about how these things will affect me long-term. For me, being treatment-free doesn’t confer much benefit if it means my health may still be in jeopardy.

At this point, the jury’s still out on whether elite controllers may get some benefit from taking standard ART. One small study with 16 elite controllers found that treatment for 24 weeks with ART reduced some measures of immune activation and inflammation (protein “biomarkers”) that are associated with mortality in people with HIV. ART also reduced residual HIV antibody and virus levels that linger in the blood and gut tissue of elite controllers. But because this study had such a small sample size, and didn’t last beyond 24 weeks, more follow-up is needed to see if these types of changes are actually clinically relevant. Do they make a significant difference in the life and health of elite controllers?

A recent review article published in the Journal of Infectious Disease this year concluded that we need better data before firm treatment recommendations can be provided to clinicians about how to treat elite controllers. At this moment in time, whether and how to prescribe antiretrovirals to elite controllers is a topic which “resides firmly in the category of ‘expert opinion.’”

Managing my HIV will be a process of constant correction.

I strive to constantly engage with the research that may inform me how best to care for my health. The scientific community is constantly correcting and expanding what we know about HIV and elite controllers. Reading everything I can, not being afraid to ask questions, and doing my homework about my health enables me to advocate for myself and be actively involved in decisions made about my health. Constant correction means that someday I may need to start taking antiretroviral therapy, or perhaps some other medication.

Right now, it means that I’m just trying to live the healthiest life that I can in the same way I did before I was diagnosed with HIV: by getting enough exercise, eating healthily and striving for a balanced life.

Rodney Rousseau is a gay man living with HIV completing an HIV immunology graduate degree in Toronto, Canada. Rodney 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. Rodney is also an author with PositiveLite.com. 

Selected sources.

Crowell, T. and others.  Hospitalization rates and reasons among HIV elite controllers and persons with medically controlled HIV infection. Journal of Infectious Diseases. 2014.

Karris, M. and Haubrich, R. Antiretroviral therapy in elite controllers: Justified or premature? Journal of Infectious Diseases. 2014.

Krishnan, S. and others. Evidence for innate immune system activation in HIV type 1-infected elite controllers. Journal of Infectious Diseases. 2014.

Saag, M. and Deeks, S. How do HIV elite controllers do what they do? Clinical Infectious Diseases. 2010.



5 Responses to Life as an Elite HIV Controller

  1. Robert Cohen says:

    Thanks for sharing your story. After 30 years as an elite controller myself it means a great deal to hear from others. I can’t say the anxiety about what’s next ever really goes away but with the amount of research in this area I hope they’ll learn lots from us in the older generation that will be to your benefit. Hang in there!


  2. I have just discovered that I am an Elite Controller and I want to thank you for addressing the topic. I think we all need to know one another because it sure seems like we don’t really fit in the scheme of HIV.


  3. Alway says:

    wow. i was only diagnosed a year ago and am also an eilte controller. I have the same feears and also feel a lot of guilt (why am I so lucky where others arent?) I’ve found it hard to get information about us and this article has given me more info than an entire year of research. thank you.

    • simon says:

      Hi Rodney, I was diagnosed 18 months ago but was infected 11 years ago after working in Africa for a year. I had an African girlfriend for 3 months and pinged a swab test twice before I left. My bloods were done and they found nothing. 2 years ago i pinged one again and again the bloods found nothing. After seeking advice i went to the immunology department of my local hospital and they finally found it.Turns out i am an elite controller. I was also diagnosed with hashimotos thyroiditis and now I’m wondering if this wasn’t due to my hyper immune system. Food for thought. Si

  4. Brad says:

    I was diagnosed HIV+ in 2009 at age 24 and I am also an ‘elite controller’. Many in the community who heard I was positive but not on ART didn’t mince words in telling me how irresponsible I was being for not taking medication, meanwhile my doctor was telling me I didn’t need to. There isn’t much info on the net (so thank you Rodney for your informative post!), but after getting second & third opinions from doctors outside of my network, I’ve stuck to my decision to stay on top of my labs and not do ART for now. Who knows what’s to come. A process of constant correction, for sure. I’m just grateful to see articles like this is bubbling up for others to find and not feel so alone.