Who can I speak to about being an HIV elite controller?
I am an HIV elite controller but I am taking ART and have done so since I was diagnosed a year ago. I was wondering if you knew where I could go to speak to a doctor who is a specialist on elite controllers?
The cases seem so rare that they do not seem to know much about it when I see some doctors (most of them do not know what it is).
This worries me as I always hear that ECs are likely to develop many other infection or diseases in vital organs.
Thanks for your question.
The is a wide range of individual responses to HIV.
Some people can be hopsitialised in early infection or, without treatment (ART) can progress within a year of infection.
Other people can go for more than 10 years and keeping a strong immune system and a low viral load with using ART. This involves keeping their CD4 count above 500 cells/mm3. Although these people were first called long-term non progressor’s (LTNPs) this was more accurately changes to long-term slow progressor’s (LTSPs).
Elite controller is a term to describe people who not only keep a strong immune system without ART, but also keep an undetectable viral load.
My first question is really how your doctor decided that you were an elite controller if you started ART as soon as you were diagnosed? Was this because your only risk would have been years before? Or was there another reason?
Being an elite controller is a good thing. It shows you have a very strong immune response to HIV. It is only linked to higher risks of other infections if you do not use treatment. This is thought to be because some ECs had very low levels of HIV in parts of there body for perhaps 10-20 years without using ART.
In 2018, both LTSPs and ECs are still recommended to use ART. This is even though, as you point out, the data in these cases is quite small.
I will also email you privately about how you can talk about this if your doctor does not have this experience.
This i-Base article includes more information: