No more AIDS terminology

[Matland]

Hey guys,Check it out http://www.cdc.gov/mmwr/preview/mmwrhtml/rr6303a1.htm

[Ptrk3]

Not quite sure what you mean.  "Stage 3" is considered to be AIDS for surveillance purposes.  It's important, though, to note that this is for "surveillance" purposes, so that the CDC and other sources can allocate resources where most needed (i.e., physicians in the United States are required to report to the CDC by name any individual at Stage 3).

Practically speaking, many physicians have abandoned the term AIDS and just use the term "advanced HIV disease" when describing Stage 3 patients.

[Jim Allen]

I updated the subject with the word "terminology" just so its more clear.

Jim

[CaveyUK]

A lot depends on where you live too. In the UK, the word 'AIDS' is rarely used and has been replaced by 'advanced HIV'.

'AIDS' obviously has a history to it, and is linked in most peoples minds with uncontrolled HIV which eventually leads to death.

With advances in medication, and most people able to boost their immune function back into normal range - at least in the developed world, the US-style classification up to this point, has only served to sustain stigma and create unnecessary anxiety amongst people living with the virus in my opinion.

I hope this more general description as 'Stage 3' by the CDC is a step towards a more modernised classification approach.

[harleymc]

I for one, think that AIDS is a very good terminology for where I am at and have been for years.
I do have an immune dysfunction and it is acquired.

Denying that I have AIDS, denies my lived reality. It also denies that you can be well with low cd4 counts.
It also tries to sweep under the carpet, the fact that there is no therapeutic agent that works directly to increase cd4 counts.

I see real problems with terminology such as 'advanced' and 'stage', these imply a progression. There is a significant proportion of the population who would get a take home message that immune collapse is inevitable if infected with HIV and therefore don't test or don't go on medications.

[Denvaux]

AIDS (acquired immunodeficiency syndrome).

Is that little word so scary in 2016 that it needs hiding?  HIV "disease", I thought I had a virus that may or may not lead to a complex syndrome and possibly death...... now HIV is a fucking disease?
How about call HIV what it is (if it is) and not complicate matters - likewise AIDS?

[zach]

I read the paper, I don't see where it says the term AIDS is being abandoned.

I'm with Harley, no one gets to redefine what I've survived because a word triggers their feelz.

Advanced stage HIV quilt... doesnt have the same ring

If you haven't had to live it, just be grateful.

I feel like not saying the word, diminishes the memory and loss of all that have fought and died.

Edit: advertisement at the top of my window for the AIDS Memorial in Golden Gate. What else would we possibly call it?!?!

[CaveyUK]

No-one is saying AIDS doesn't exist. It still does, and untreated HIV infection will ultimately lead to it.

No-one is saying that AIDS didn't kill an awful lot of people, and that should be forgotten.

But surely it is clear than as modern medications suppress the virus and allow people back into 'normal' range of immune function, and as CD4 testing reduces/disappears for people with suppressed viral load over time, that a definition (in the US) of AIDS when someone presents with CD4 < 200 but then recovers to live a long and healthy life, actually contributes to stigma - even self-stigma, and doesn't really reflect the reality of their situation (where they are carrying HIV but otherwise healthy)?

I'm not suggesting light should be made of what people have lived through, or what some people are still doing, but a classification such as this that persists regardless of future counts, seems wrong to me. A shift in terminology doesn't fix this (or anything) but perhaps does reflect the current situation regarding treatment better IMO

[CaveyUK]

It also tries to sweep under the carpet, the fact that there is no therapeutic agent that works directly to increase cd4 counts.

CD4 is just one marker of immune dysfunction of many. It's just the easiest one to correlate with prognostic outcome when low. HIV treatment suppresses the virus - it cannot artificially increase the immune system directly, the body will do that when not fighting the virus. I don't think any of this is trying to imply that isn't the case.

I see real problems with terminology such as 'advanced' and 'stage', these imply a progression. There is a significant proportion of the population who would get a take home message that immune collapse is inevitable if infected with HIV and therefore don't test or don't go on medications.

I'm not sure I follow this thinking. How does using a term 'stage' or 'advanced HIV' give a take home message that people shouldn't test or go on medication? I'd almost argue the opposite. It shows (correctly) that untreated HIV is a progressive condition which eventually will lead to death, but that successful treatment will in some, if not all ways, reverse that progression.

The old style CDC definition that HIV is progressive, leads to AIDS and then that person has AIDS forever (in other words has a syndrome of conditions brought on by immune system destruction) is a far more bleak message which will prompt some to consider treatment as pointless, ultimately.

It's an argument about semantics and psychological effect of words ultimately, and I know there are sensitivities around it. Someone who has lived with the condition for many years, had untold problems and witnessed many of their friends die will have a take on it all, just as people without that background will have a slightly different take.

It will be interesting how it continues to develop in coming years. In some ways, there may well be a 'normalisation' of treatment approach that happens. In the UK, we are already talking about situations where CD4 count is no longer actively monitored for people stable on ART and monitoring to take place within regular healthcare settings rather than HIV specific clinics. It could be the tip of the iceberg in terms of how HIV will be viewed and treated in medical settings in a decades time.

[leatherman]

It will be interesting how it continues to develop in coming years. In some ways, there may well be a 'normalisation' of treatment approach that happens. In the UK, we are already talking about situations where CD4 count is no longer actively monitored for people stable on ART and monitoring to take place within regular healthcare settings rather than HIV specific clinics. It could be the tip of the iceberg in terms of how HIV will be viewed and treated in medical settings in a decades time.

aye, there's the rub. The same is happening in the USA. AIDS Services Organizations are turning into "federally qualified health centers" (FHQC) treating all diseases not just HIV, while the CDC changes guidelines to less cd4 testing after reaching 200 or 500 - showing just how fast the "normalization" of HIV is becoming.

I think, now that treatments are as good as there are, we will continue to see the normalization of HIV health care. Quite frankly the situation of someone diagnosed today (or within the last 5-10 years) is vastly different than the situation of someone diagnosed before 2000 or so, and always will be. Most newbies will never deal with even half of the problems that an LTS has experienced because treatment has become vastly different/improved.

For those of us used to speciality care for our terminal illness (which untreated HIV will always be), and who remember how these ASOs were started to combat the government's terrible history of not doing anything to mitigate this epidemic for many years in the beginning of the epidemic, these changes to normalize HIV seem counter to everything we fought for to get quality HIV health care. Now I, with my impaired immune system, sit in a waiting room with sniffling, sneezing, coughing children and adults who have god-knows-what that they might pass to me while the agencies that was started in memory of those lost to AIDS change their names and throw away their history.

However. although I believe almost all stigma is internalized stigma, I can certainly see how removing "AIDS" from the definition and the title of the healthcare agencies that care for PLWH, makes the newbies feel better about themselves without that label. Sadly, I think it's simply a way to whitewash the history of the AIDS epidemic away and coddle newbies so they can "feel" better about being HIV positive.

For full disclosure, I should point out, as an LTS who was diagnosed with AIDS back at the first of the 90s, I also still argue for the phrase "full blown AIDS" because anyone who has been hospitalized with AIDS understands how different that "stage" is compared to when you're not having symptoms but still in the AIDS stage. I also feel that telling doctors (who aren't ID doctors) that I had AIDS conveys more than saying I had advanced HIV disease. Since I lived with "AIDS" for 15 years of my 31 yrs with HIV, I need doctors to know how sick I was so they will be on the lookout for issues. Doctors who are not ID doctors might not understand what advanced HIV disease even means. Plus that designation of "AIDS", here in the USA, is what helps me be eligible for programs that provide my HIV health care and other services.

[CaveyUK]

Yes there are some particular aspects of the US health system which makes classifications a little different to other parts of the world, and I can understand why those classifications may make some sense.

I agree with your post leatherman with the exception of the bit about wording change seeking to 'whitewash' history. Unless there is some devious motive at play, I don't think that is the case. And will (or should) never happen.

But I do think there is some merit in newbies feeling better about having this condition, given the treatment and outlook these days. I don't think there is anything too sinister about that, and if the upshot of that is that other, less enlightened people see HIV as more of a chronic, manageable condition then I don't think there is a downside as far as stigma is concerned.

Rather than view the normalisation of HIV as a negative, perhaps it should be celebrated as an indicator of how far things have come, and vindication for the many people who spent so long over the years fighting for proper government focus, investment and support networks?

The danger is the past being forgotten, and investment being prioritised elsewhere I think. And that is why activism is still critically important.

[harleymc]

Ok I get the message, people living with AIDS don't exist.

It appears that cavey finds my existence and health status is problematic.

[Jim Allen]

However. although I believe almost all stigma is internalized stigma,

Whilst I agree that a lot of people suffer from internalized stigma, general stigma is still seems to be rampant to me, even under medical professionals. Both need to continue to be addressed.

Myself, I don't have internal stigma as such (not that i am aware of) however I have been refused medical treatment because of my HIV status, lost my job because of my status and had a GP in (2014) warn people that I am a danger to my kids.  Now I don't normally post much about my problems but when i go to support sessions with other people living with HIV it's very clear my experience is not unique and stigma/discrimination based on HIV status is still a real problem even today.

Looking at the 2015 UK stigma index "Participants said" section I see i am not the only one facing this level of ignorance and stigma.   http://www.fpa.org.uk/news/stigma-index-uk-2015-findings-stigma-and-discrimination-era-undetectable-hiv

However. although I believe almost all stigma is internalized stigma,

  I mean one-fifth of all participants reported verbal harassment or threats. That hardy the voices in their heads telling them that.

Look I get it that stigma is far less of an issue that it use to be however its far from almost all internal stigma.  Its still too high of a level, its still too much and it still disrupts peoples lives, i seriously think it is a huge torn in side of the 90-90-90 goals   

The whole Aids terminology thing, its not going anywhere soon, 4000+ people diagnosed with AIDS (2015 report over 2014) * in the EU.  As soon as nobody new get diagnosed through better treatment and detection (Testing) the term will become history all by itself no need to try and remove the term or call it something nice just keep working on the goals we have.

Jim

*
http://ecdc.europa.eu/en/publications/surveillance_reports/Pages/index.aspx
 

[Jim Allen]

I mean one-fifth of all participants reported verbal harassment or threats. That hardy the voices in their heads telling them that.

@leatherman

I'm sorry and apologize for the rant and some of my post.

Jim
 

[CaveyUK]

Ok I get the message, people living with AIDS don't exist.

It appears that cavey finds my existence and health status is problematic.

That's not what I said. How you reach that conclusion is beyond me... You are clearly not reading my post and just making up your own mind as to what I'm saying regardless

I'll bow out of this subject as clearly some are too sensitive to engage in proper discussion on the subject. It Is a shame when this condition has so much open discourse online that we have to walk on eggshells regarding the use of a word and its relation to stigma.

I do understand it. It's just a shame.

[Wade]

Anythings better than GRID 

[CaveyUK]

Anythings better than GRID 

Or 'The 4H Disease' which the CDC used for a time, the 'H's being 'Homosexuals, Heroin Users, Haemophiliacs and Haitans'

[bocker3]

OK - I'm a little late to this thread, but ........

I think this is nonsense.  You don't change the name of a disease/condition/whatever, just because it's associated with negativity (which is my read on this). 

We are ONCE MORE, singling out HIV/AIDS as "special" case and feeding into the stigma.  We all rail against HIV criminalization and say how the law is treating this disease differently and feeding into the stigma.  This name change is no different.  The people who had AIDS in 1985, were infected with the same virus that I am infected with in 2016.  The outcomes are much more positive today than then, but the underlying cause of this infection is exactly the same -- HIV.

I mean for years (decades, centuries perhaps), cancer was met with stigma.  It was talked about in hushed tones (if talked about at all).  there wasn't much hope once diagnosed - limited treatment options.  Today, many cancers have tremendously improved outcomes and chance for long-term survival.  I have not heard anyone suggest we rename cancer to something that will make people feel better.

Let's stop with this insanity.

Mike

[leatherman]

I think this is nonsense. . . .
Let's stop with this insanity.

you WIN the internet today with this! 

I can't tell you how much I rail against the self-induced stigma that HIV seems to inspire in both people and heath/service agencies.  We won't be able to break the stigma, until we break our own stigma

[bocker3]

you WIN the internet today with this! 

Can I get it in purple, please??  Wrapped in a big Red AIDS ribbon 

[CaveyUK]

We are ONCE MORE, singling out HIV/AIDS as "special" case and feeding into the stigma.  We all rail against HIV criminalization and say how the law is treating this disease differently and feeding into the stigma.  This name change is no different.  The people who had AIDS in 1985, were infected with the same virus that I am infected with in 2016.  The outcomes are much more positive today than then, but the underlying cause of this infection is exactly the same -- HIV.

No-one is suggesting we call HIV anything else. You are right that HIV is the same virus it always was.

The thornier issue is about the term AIDS. In the US, the CDC have historically used the term for classification purposes, albeit incorrectly (AIDS is a syndrome, not a disease. And the CDC have never required a defining illness to be present to classify it as AIDS, which doesn't make much sense clinically). Given the stigma, both internal and external, that is connected with the term - largely due to 'successful' health promotion in the 80's, certainly in the UK - it makes sense to re-asses this and referring to severe immune suppression in lieu of AIDS defining illnesses, could better be described as 'Advanced HIV' or suchlike.

HIV still exists as a virus. AIDS still exists as a syndrome. I think the whole issue is about how to define a severely damaged immune system without defaulting into using a term which aside from being clinically inaccurate for some, does carry with it it's own stigma - rightly or wrongly.

[bocker3]

No-one is suggesting we call HIV anything else. You are right that HIV is the same virus it always was.

The thornier issue is about the term AIDS. In the US, the CDC have historically used the term for classification purposes, albeit incorrectly (AIDS is a syndrome, not a disease. And the CDC have never required a defining illness to be present to classify it as AIDS, which doesn't make much sense clinically). Given the stigma, both internal and external, that is connected with the term - largely due to 'successful' health promotion in the 80's, certainly in the UK - it makes sense to re-asses this and referring to severe immune suppression in lieu of AIDS defining illnesses, could better be described as 'Advanced HIV' or suchlike.

HIV still exists as a virus. AIDS still exists as a syndrome. I think the whole issue is about how to define a severely damaged immune system without defaulting into using a term which aside from being clinically inaccurate for some, does carry with it it's own stigma - rightly or wrongly.

Your "logic" is too convoluted to follow.  You seem to be doing backbends in order to rationalize singling out HIV/AIDS as somehow "different" from all other diseases and/or "syndromes" (this distinction is weak, IMO).

Let's look at what you are saying -- instead of calling severe immune suppression, AIDS (Acquired Immune Deficiency Syndrome), we should call it "advanced HIV"?  WTF is the difference here, except for a word.  Yes, a word with lots of stigma attached, but one doesn't remove stigma by trying to "trick" people -- one faces it head on and fights it.  That fight starts with ourselves.

Even looking at it from a pragmatic POV nothing magically changes, as far as stigma is concerned;-- so, we start using "advanced HIV".  People will say, "What is that?"  "oh, it used to be called AIDS" shall be the response.  No loss of stigma at all.

I understand what you are trying to do -- but there is no way to wave a wand and have stigma removed (internally or externally).  The "thorny issue" of which you refer is not the term AIDS, it is people's reaction to the term.  You can try to call it something else, but people will still "define" the new term by the term it replaced.

I stick to my original position -- this is NONSENSE and allows stigma to continue unabated. 

Mike

[Ptrk3]

Given the stigma, both internal and external, that is connected with the term - largely due to 'successful' health promotion in the 80's, certainly in the UK - it makes sense to re-asses this and referring to severe immune suppression in lieu of AIDS defining illnesses, could better be described as 'Advanced HIV' or suchlike.

HIV still exists as a virus. AIDS still exists as a syndrome. I think the whole issue is about how to define a severely damaged immune system without defaulting into using a term which aside from being clinically inaccurate for some, does carry with it it's own stigma - rightly or wrongly.

I think you are correct, CaveyUK.  That is my sense of things, not that the more- and-more infrequent use by first-line practitioners of the term "aids" is meant to "whitewash" the illness, or disrespect the memories of those who have died from this pandemic disease, but used to more accurately define the spectrum of the disease today and to move away from a highly charged and stigmatized word, which many people still associate with emaciated people with KS lesions, and such.

Some people meet the criteria of the term "aids" (CD4's fewer than 200) and look healthy and feel healthy.  Others, having been stricken with opportunistic diseases such as pneumocystis pneumonia and wasting, recover, look and feel healthy, return to full lives (including work), and, whilst taking a pill a day, are pretty much unaffected by the disease, or affected no more than someone with some other chronic diseases such as diabetes, etc.

Yes, they still have, according to the surveillance definition, "aids" but if they've recovered from CD4's of 20 to CD4's of 800, how useful, really, is it use the terms "aids" routinely, if it carries such negative "social" meaning?

I think the shift to the idea of "HIV disease" provides the concept of a dynamic spectrum of disease progression and regression (for those who have experienced the "Lazarus Effect" and bounced back from single digit CD4 counts to CD4 counts in the "normal" range).

The term "aids" certainly will continue to exist for surveillance purposes (and diagnostic purposes for those who present themselves with appropriately low CD4 counts and/or aids-defining illnesses), but the use of the term "HIV disease" as a continuum has contemporary value and may reduce the trauma of a highly charged word.

Of course, those who meet the definition of "aids" and wish to define themselves as someone with "aids," are free to do so, but, personally, I don't think using the term "advanced HIV disease" in a clinical setting, in order to avoid usage of a highly charged word, is a bad thing: to each his own.

[CaveyUK]

Your "logic" is too convoluted to follow.  You seem to be doing backbends in order to rationalize singling out HIV/AIDS as somehow "different" from all other diseases and/or "syndromes" (this distinction is weak, IMO).

It's not weak. My logic isn't convoluted. I am saying there is different levels of impact from HIV infection, of which AIDS is the final stage. That's just fact.

Let's look at what you are saying -- instead of calling severe immune suppression, AIDS (Acquired Immune Deficiency Syndrome), we should call it "advanced HIV"?  WTF is the difference here, except for a word.  Yes, a word with lots of stigma attached, but one doesn't remove stigma by trying to "trick" people -- one faces it head on and fights it.  That fight starts with ourselves.

Please don't tell me what I am saying, when I am clearly saying something different.

AIDS is a syndrome. If you don't have defining illnesses which comprise that syndrome you - by definition - don't have AIDS. Just because the CDC have used the term erroneously for classification purposes doesn't make it correct. But we need to define what is 'advanced immune deficiency' from a treatment perspective...I don't really care what they call it but 'Advanced HIV Infection' seems appropriate.

Even looking at it from a pragmatic POV nothing magically changes, as far as stigma is concerned;-- so, we start using "advanced HIV".  People will say, "What is that?"  "oh, it used to be called AIDS" shall be the response.  No loss of stigma at all.

No, because AIDS is still a very real thing.

I understand what you are trying to do -- but there is no way to wave a wand and have stigma removed (internally or externally).  The "thorny issue" of which you refer is not the term AIDS, it is people's reaction to the term.  You can try to call it something else, but people will still "define" the new term by the term it replaced.

I don't agree at all. The CDC have this thing whereby if you are classified as having AIDS either by actually having it or by registering a CD4 count less than 200 with no other symptoms, and yet have a recovered immune system through effective treatment you are still classified as having AIDS. Thats ridiculous. I would suggest that most people in general population understand that nowadays HIV is not a terminal condition, but AIDS is. To me, continued use in that context just increases the stigma that person feels, be that external or internal. Unless someone is wearing it as a badge of honour, there is no clinical reason for it.

I stress again that I am not denying AIDS exists. It's a very real thing and people still die from it. But to shun any changes in medical classification or description because you are holding onto an earlier definition does not make that view correct. If an individual chooses to define themselves thats way, fine. But thats not what we are talking about.

I stick to my original position -- this is NONSENSE and allows stigma to continue unabated. 

There is no magic bullet to end stigma, least of all changing of clinical classification. I do think that such a distinction will help though, even if it is only in a minor way.

[bocker3]

Well, your last post seems to clarify some things -- I THOUGHT you wanted to do away with the term AIDS entirely -- due to its "baggage".  The title of the thread is "No more AIDS terminology", after all.

However, now I am reading that you are more against AIDS diagnosis being "stuck" with someone forever, even if their immune system recovers with treatment.  If that is what you've been getting at -- that may be a different kettle of fish. 

I agree that it might make sense to stop saying someone has AIDS if they actually have a well-functioning immune system (due to ARV's).  Perhaps cancer remission would be a decent analogy here.  I suppose the main difference with that analogy is that you can be in remission and not be taking any treatment.  With HIV -- if you stop your treatment, you will almost always progress to AIDS again.  Hence the one nit that could still be picked.  Even when you have a decent CD4 count, it is only due to the ARV's suppressing the virus.  So you really do ALWAYS have an acquired immune deficiency -- you are just able to block the virus with meds.  I mean a diabetic is a diabetic whether well controlled or not (to use another analogy).  Despite that, I would be less concerned with pulling back on an "AIDS" diagnosis once  someone is on effective treatment if it was done to better relate actual current health, vs. doing it to lessen stigma (because it wouldn't).  If we are doing this due to stigma, it doesn't hold for me.

There is no magic bullet to end stigma, least of all changing of clinical classification. I do think that such a distinction will help though, even if it is only in a minor way.

I will disagree with this comment though - the stigma is NOT THE CLASSIFICATION, it is how people react to it.  You fight stigma by changing the reaction, not what people are reacting to in the first place.

Mike

[leatherman]

And the CDC have never required a defining illness to be present to classify it as AIDS,

time for a little LTS history. The CDC did require an opportunistic infection to be present with a cd4 count less than 200 to be classified as AIDS. it wasn't until just the last 5 -7 yrs that the definition was changed to using only a cd4 count of <200

they still have, according to the surveillance definition, "aids" but if they've recovered from CD4's of 20 to CD4's of 800, how useful, really, is it use the terms "aids" routinely, if it carries such negative "social" meaning?

many people only wish they had a nadir of 20 and recovered into the 800s. Studies have shown that people with very low nadirs (<100) often take much longer to "recover" and often recover much less than what might be desired.

I myself went down to 5 and after 25 yrs of meds have climbed to a whopping 315. For me that AIDS classification has provided 25 yrs of health care. That classification has also prompted the non-Infectious Disease doctors that I have seen to take be more observant of issues that I might have because of living with "AIDS" for as long as I did (17 yrs)

I would also like to add that as far as destigmatizing the words around HIV that we need to keep some of the stigma. Here in the Southern states of the USA, 15% of people diagnosed with HIV and 27% of those diagnosed with AIDS die within 5 yrs. We're still in the middle of an AIDS epidemic and I think we need that word to make people understand the extent of this horrible problem and that we are a long ways from the "end of AIDS" (which I think is just a lot of wishful thinking isolated to some urban areas that are getting the epidemic under control).

I will disagree with this comment though - the stigma is NOT THE CLASSIFICATION, it is how people react to it.  You fight stigma by changing the reaction, not what people are reacting to in the first place.

i think a lot of AIDS (and HIV) stigma is self-induced and that's were the first change has to happen. We, meaning PLWHA, have got to know the facts and be defiant against any who would want to discriminate against us or those who would want to marginalize us with words or attitudes