Question
Who can I speak to about being an HIV elite controller?
10 November 2018. Related: All topics, Living with HIV long-term, Newly diagnosed.
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.
Answer
Hi
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:
Hi Deejay, there is no way to no if someone is an EC without coming off ART. Being an EC is rare which is why it would not be recommended to be tested by a doctor. There is more risk to your health for coming off ART to see if you’re an EC, in comparison to the benefit of potentially being an EC.
how does a person know if they could be an EC if they have never been off of ART and have remained at high levels of CD4/CD8 and been undetectable? I can only assume doctors will deter you from going off your meds and therefore you will never know if you are an EC?
Hi Tunie,
Unfortunately we are not doctors at i-Base. But it’s good to know that you seem well.
However, it’s a good idea to talk to your doctor about whether you are an elite controller.
I was diagnosed in 2004 and up to now .i am not taking any medication .can i be EC
Hi Peter,
Thanks for this comment. Does that mean you are an elite controller?
As Simon asks above, how was it your doctor decided that you were an elite controller? What reasons were there for this? Please let us know.
I left treatment 4,5 a year ago and I have good results
Tom lalande
11:26 AM (2 hours ago)
to questions
Hi Simon
Thanks for your quick response! I was diagnosed EC as my viral load was always undetectable and my CD4 count was always high. However, all tests showed I was positive (the finger prick test always came back unclear too- which confirmed their diagnosis). I decided to go on treatment despite being undetectable.
I would love to know more about UK group studying this please!
Many thanks