Question

Why have I been labelled as ‘vulnerable’?

7 January 2022. Related: All topics, CD4 and viral load, COVID-19, Living with HIV long-term.

I’ve been sent a letter from NHS England. It says I am ‘clinically vulnerable’ and more at risk of serious illness if I get Covid 19. I have therefore been sent a PCR Test kit and have been told if I test positive, I can access new pills to treat Covid 19. But I was also contacted at the beginning of the Covid 19 pandemic by letter and over phone. I was told because of my HIV I was ‘clinically vulnerable’ to shield etc. This guidance was confirmed to be incorrect. My last CD4 count was over 500 and viral load undetectable (annual check, last done May 2021). It has been this way for over a decade. My ARVs are Nevarapine, Descovy and Acycolvir plus I take Lostartsan 100 mg and Amlodipine for hypertension daily.

I am fully vaccinated for Covid 19 (AZ x2 plus on November 30 2021 Pfzizer booster). I checked with my GP and HIV clinic, both confirm that I am not, according to them deemed as ‘clinically vulnerable’. I then called 119 and asked why I got the NHS Letter, as was told ‘HIV is one of the conditions’, I wanted to know what the position is regarding my situation (and others like me who are not immune suppressed and who are living well with HIV), given I do not have any information on potential interaction with my current medications and the new ones I now have access to should I get a positive PCR Test. Can you help advise.

PS Ive spent years of psychological input trying to shift my perception of HIV. I survived an AIDS diagnosis in 2000. I am male and 63 years of age. Being labelling like this as ‘vulnerable’ sucks. I realise the NHS is trying to be helpful be offering access to new Covid 19 treatments but it feels this has been done as a blanket approach by labelling me and others with HIV as ‘immune suppressed’ when in fact I am not.

Many thanks,
Nicholas

Answer

Answer: Josh Peasegood

Hi, how are you?

The guidance and the labelling are offered over a broad spectrum of HIV. As mentioned by 119 there is no definition for CD4 count and viral load. Rather a broad umbrella is being used to label anyone as HIV positive as vulnerable. In this sense the advice from your GP and HIV clinic are correct. You are not vulnerable. As you have a CD4 count at a level within a healthy range and are not detectable you are not nearly at the same risk as someone living with more progressed HIV (lower CD4 counts). The government and other bodies have failed to make a distinction between those living with HIV who are at risk, and those who are well managed on medication and are not at risk.

Based on limited research, a more severe infection is possible. Even with a CD4 count as high as yours, negative outcomes are still increased in those living with HIV. This is likely the reason you will have received this letter. This link is to a summary of this preliminary research that may be of some interest: https://i-base.info/htb/41117 Although your upset is more than valid, an error in this direction is much more favourable than if a risk was present and HIV was missed from listed criteria.

This being said, I am unaware of specific algorithms used. This may have been a label used in conjunction with not only your HIV status but also other underlying health conditions e.g., hypertension. Weight and age can also factor in.

It is also important to note that while ‘vulnerable’ is being used as a label to define people more at risk. It doesn’t impose further restrictive guidance on living. Rather it just says to be more strict, which technically everyone should be doing. Especially at the moment with Omicron. There is a positive in the sense that you do now have access to this new medication. While it does seem to be a response to being termed ‘vulnerable’, You do now have an option to not experience a more severe infection of COVID-19.

Josh.