Clinical stage 4 HIV

[Jim Allen]

Terminology we had threads on this before.
- https://forums.poz.com/index.php?topic=62846.0

I think it should be called "Sprinkles and Sunshine" You have stage 4 "Sprinkles and Sunshine" Mr. Allen 

Anyhow the one that caught my eye this morning was again someone writing about terminology and usage of ‘clinical stage 4’ instead of AIDS.  Now each their own opinion about what is negative.

Personally "Stage 4" anything is scary as hell sounding, and in terms of HIV this sounds way worse than AIDS, "clinical stage 4 HIV" Raises the question what is it & it sounds like death is soon and/or some sort of worse new HIV.

HIV & AIDS everyone has a fair idea.  Anyhow I decided to test this on my poor GF this morning ‘I told her  "Honey I have clinical stage 4 HIV"

She hugged me, slightly upset and wanted to drive me to the hospital, than I said don't be daft its just updated PC term for "AIDS"  She laughed and nearly slapped me

https://www.avert.org/news/6-hiv-facts-shout-about

[kentfrat1783]

And I'm sure you knew she was going to nearly slap you.  I'm still thinking she will get you back when you least expect it. 

I've never thought of using Stage 4 (or 1 - 3) when I was Dx'd. My ID doctor won't even use the AIDS term as he says it's outdated.  The state nurse that came to see me did use the term based on "technicality" but she didn't even believe it is needed these days. 

Things have come a long way.  That is what matters in all of this. 

[Jim Allen]

And I'm sure you knew she was going to nearly slap you.  I'm still thinking she will get you back when you least expect it. 

I suspect so 

Things have come a long way.  That is what matters in all of this.

Oh It has and despite exceptions I would like to think most people at least, have a reasonable understanding of HIV/AIDS and that HIV is manageable with treatment. People stressing or blogging about terminology to the public is a waste of focus that should go towards better things like U=U or how manageable HIV is

Jim

[CaveyUK]

Terminology has always been a frustrating one. Especially this barrier which sends people from 'HIV' to 'AIDS' depending on regional definitions.

Apologies to folk who are defensive about this, and I do understand why but I'm just giving my own perspective here....

We are all living with HIV, whether we have a CD4 count of 1 or 1000.

If we develop an AIDS-related illness, as part of the syndrome which defines it then it's AIDS. But someone who has AIDS is still living with HIV and thanks to medication in 2018 has a great chance of a full recovery.

The tricky bit is the arbitrary threshold at which different regions classify the HIV infection as being at an advanced stage, and it's been known as AIDS (esp in the US), more recently 'advanced HIV' and now this 'Stage 4 HIV'.

Frankly, I find it all a bit over the top. We are all just living with HIV, period. I think we are all intelligent enough to know that fewer than 200 t-cells is in the territory where AIDS-defining illnesses can happen, and that risk magnifies under 50 t-cells. I'm not really sure what anyone gains these days by adding a title to it.

Years ago, when an AIDS diagnosis - even in the absence of the syndrome itself - was given, there was at least a modicum of sense from a caregiver and disability benefit perspective, as it was a progressive disease. Nowadays for most, it is a chronic condition, even if diagnosed with a low CD4 count.

That's not to say that AIDS doesn't exist as it does, and in some places where meds are not available or there are social/stigma issues then it is STILL a progressive disease. But that already has a label. I just don't think we need to create labels for degrees of 'HIV' in addition.

[Jim Allen]

'advanced HIV' and now this 'Stage 4 HIV'.

You can add "Late stage or Late diagnosis" to the list. 

That's not to say that AIDS doesn't exist as it does, and in some places where meds are not available or there are social/stigma issues then it is STILL a progressive disease. But that already has a label. I just don't think we need to create labels for degrees of 'HIV' in addition.

I would say for many it still is, anyhow I fully agree with you on the point that new labels are not needed. Its a waste of time, focus and energy that is better spent on more worthwhile efforts.

Jim

[leatherman]

I remember when I was a C3


Twenty-five years later, I'm a Stage 2 instead of an A2



In the end, these are all just labels. The only people who should be worried about which label to use is you (in your own head, dealing with your diagnosis), your doctors (so they treat you properly), and perhaps a government health department (supplying you with the resources to receive health care).

[Jim Allen]

Stage "Unknown"   

[harleymc]

All the world's a stage....

[Ptrk3]

A different day, a different time.

Thank medical science (brilliant researchers and healthcare providers and eternally blessed may all the gays be--of both sexes--let us never forget, ever and truly, the gay women who stood by male gays, nursed us, buried us:  our sisters forever) and the ACT UP heroes that had the courage and insight to fight for millions throughout the world.

All of you helped save so many lives.  Thank you.

I was diagnosed with PCP, a CD4 count of nine, and a VL of 110,000, in 2013.

Coming soon on my five-year anniversary (of diagnosis), still here, healthy, grateful, and mindful to help others to accept themselves and endure.

Peace of mind and health to us all and to all who may support us.

The great journey continues.

[CaveyUK]

how can you have an 'unknown AIDS defining condition'?

Seems like an oxymoron, or at best superfluous

[mecch]

In a world where many people have inadequate health care and treatment, let alone enough money to live comfortably and safely, I am in favour of any sort of labelling that helps improve someones health and financial security.

[leatherman]

I am in favour of any sort of labelling that helps improve someones health and financial security.

amen brother.  I'm happy to have that label since it's kept me alive for so long. here in the States, that word "AIDS" has given me access to meds and healthcare for decades

[bocker3]

Of course, all these "labels" aren't really meant for US.....  they help doctors understand where someone's disease progression sits.  This, in theory, should convey information and help with overall treatment approaches.  This, very likely, all becomes very difficult as the nomenclature changes all the time because people take umbrage.

Think about it -- we all go around saying "I am undetectable" -- well, NO -- your serum HIV level is beyond detectable limits in the lab.  We can ABSOLUTELY detect your presence!!

Funny -- I'm going through a similar "semantics" thing at work, that is driving me crazy. (not that I am comparing HIV to my job -- just that people are focusing on the wrong thing -- WORDS instead of important things).

The old adage that "not everything is about YOU" -- even when it is a label to describe an illness you have -- seems to fit here.

Mike

[CaveyUK]

I don't disagree with you, but thats why it's a bit ridiculous that labels exist in the first place. I'm not even sure they help doctors.

I mean - saying 'HIV+ CD4 128 VL 150k No-Aids defining illness' is being really specific, and paints the full story, rather than 'HIV Classification A3' which will always have people, including some med professionals running to  reference table to work out

AIDS is a bit of a classic one, because the actual word relates specifically to a syndrome of illnesses than can manifest at low CD4 levels. In the US, it was re-appportioned to mean less than 200 CD4 even if there are no symptoms. I get why it happened, and it was important for a variety of healthcare and insurance reasons at the time, but it doesn't half cause some confusion when applied internationally...one of those things that sets me off wondering why everyone is hell bent on categorisation and labels when it can sometimes just be easier to be specific!

Another example in my profession are project names. Rather than say 'The Financial Year End Process Improvement Project', it will be called something like 'Project Nebula' which only serves to make just about everyone clueless as to what it's actually about

[MadDog125]

Maybe it’s because I’m an aircraft mechanic.  I was taught to label things accurately weather they feel good or not.  I am a gay male infected with hiv.  At the time of diagnosis my cd4 was 112.  As far as my doctor was concerned that was late stage 2 early stage three.  Personally I think he was trying not to scare me.  Way too late for that.  My specialist explained that while my cd4 count was within the AIDS threshold the lack of a defining illness meant I wasn’t there, yet...  personally though I reject the undetectable term too.  Mainly because it’s still quite detectable and countable.  Not unlike when I analyze an oil sample.  Titanium either is or is not in the sample.  Trace amount is still in the system.

[CaveyUK]

I think UD does serve a purpose, to the wider public rather than us pozzies perhaps. I think most of us could cope with knowing that we are not infectious when our VL is <200, but in terms of reducing stigma within the general population 'U=U' or the concept that the virus is 'undetectable' helps a great deal.

And of course, until we have lab tests that measure down to much smaller numbers more commonly in use, the 'undetectable' term is correct - in terms of lab thresholds

[bocker3]

I think UD does serve a purpose, to the wider public rather than us pozzies perhaps. I think most of us could cope with knowing that we are not infectious when our VL is <200, but in terms of reducing stigma within the general population 'U=U' or the concept that the virus is 'undetectable' helps a great deal.

And of course, until we have lab tests that measure down to much smaller numbers more commonly in use, the 'undetectable' term is correct - in terms of lab thresholds

Actually, I think "Non-infectious" would be FAR more helpful for the general population than "undetectable". 

Additionally, as a Clinical Laboratory Scientist (not practicing any more), I was shocked when labs started to report results below their assay's threshold as "undetectable", because it is, in fact, often NOT TRUE.  The assay will detect low levels of virus, it is just that below the threshold, it isn't possible to consistently reproduce the same result on the same sample.  The way I reported tests that had a lower limit of reliability was to say < X "below lower limit of reportable range"

Now -- my lab does report things differently.  It never says undetectable (my doc says that though), it reports one of 3 ways:

A number, if 20 or greater        OR
<20, HIV-1 RNA Not Detected  OR
<20, HIV-1 RNA Detected

I like that change!  It reflects the truth.

Mike

[CaveyUK]

Thinking about it, I used to get texts saying '<50' for a while, but these have recently been swapped out for 'UD'.

In a way, I hope the tests don't get any more sensitive. I can't imagine the number of folk who would worry about 'my VL has gone from 3 to 7...panic!'