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Author Topic: No more AIDS terminology  (Read 659 times)

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Offline Matland

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No more AIDS terminology
« on: May 11, 2016, 08:49:49 AM »
« Last Edit: May 11, 2016, 11:34:43 AM by JimDublin »

Offline Ptrk3

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Re: No more AIDS
« Reply #1 on: May 11, 2016, 10:48:15 AM »
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.

Offline JimDublin

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Re: No more AIDS terminology
« Reply #2 on: May 11, 2016, 11:36:29 AM »
I updated the subject with the word "terminology" just so its more clear.

Jim
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Offline CaveyUK

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Re: No more AIDS terminology
« Reply #3 on: May 11, 2016, 07:28:11 PM »
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 In the UK, the word 'AIDS' is rarely used and has been replaced by 'advanced HIV'.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.
Diagnosed 29th Dec, after Home test 27th Dec 2015
29th Dec 2015 - CD4 160, VL 70,363, CD4% 16
Started Septrin 31st Dec & Tivicay/Truvada 12th Jan 2016
9th February 2016 - CD4 245, VL 96, CD4% 19
8th March 2016 - VL 61 (no CD4 taken)
5th April 2016 - CD4 354, VL <40, CD4% 22

Offline harleymc

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Re: No more AIDS terminology
« Reply #4 on: May 11, 2016, 08:40:15 PM »
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.

Offline Denvaux

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Re: No more AIDS terminology
« Reply #5 on: May 12, 2016, 01:11:02 PM »
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?


Offline zach

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Re: No more AIDS terminology
« Reply #6 on: May 12, 2016, 03:10:29 PM »
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?!?!
« Last Edit: May 12, 2016, 03:12:39 PM by zach »

Offline CaveyUK

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Re: No more AIDS terminology
« Reply #7 on: May 12, 2016, 06:31:30 PM »
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
Diagnosed 29th Dec, after Home test 27th Dec 2015
29th Dec 2015 - CD4 160, VL 70,363, CD4% 16
Started Septrin 31st Dec & Tivicay/Truvada 12th Jan 2016
9th February 2016 - CD4 245, VL 96, CD4% 19
8th March 2016 - VL 61 (no CD4 taken)
5th April 2016 - CD4 354, VL <40, CD4% 22

Offline CaveyUK

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Re: No more AIDS terminology
« Reply #8 on: May 12, 2016, 06:41:25 PM »
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.

Quote
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.
Diagnosed 29th Dec, after Home test 27th Dec 2015
29th Dec 2015 - CD4 160, VL 70,363, CD4% 16
Started Septrin 31st Dec & Tivicay/Truvada 12th Jan 2016
9th February 2016 - CD4 245, VL 96, CD4% 19
8th March 2016 - VL 61 (no CD4 taken)
5th April 2016 - CD4 354, VL <40, CD4% 22

Offline leatherman

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Re: No more AIDS terminology
« Reply #9 on: May 13, 2016, 06:09:40 AM »
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.
leatherman (aka mIkIE)

Sometimes it snows in April
Sometimes I feel so bad, so bad
Sometimes I wish that life was never ending,
But all good things, they say, never last

All good things, they say, never last
And love, it isn't love until it's past

chart from 1992-2015
Isentress/Prezcobix

Offline CaveyUK

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Re: No more AIDS terminology
« Reply #10 on: May 13, 2016, 09:52:21 AM »
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.

Diagnosed 29th Dec, after Home test 27th Dec 2015
29th Dec 2015 - CD4 160, VL 70,363, CD4% 16
Started Septrin 31st Dec & Tivicay/Truvada 12th Jan 2016
9th February 2016 - CD4 245, VL 96, CD4% 19
8th March 2016 - VL 61 (no CD4 taken)
5th April 2016 - CD4 354, VL <40, CD4% 22

Offline harleymc

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Re: No more AIDS terminology
« Reply #11 on: May 20, 2016, 03:23:35 AM »
Ok I get the message, people living with AIDS don't exist.

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

Offline JimDublin

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Re: No more AIDS terminology
« Reply #12 on: May 20, 2016, 04:16:34 AM »
Quote
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

Quote
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
 
« Last Edit: May 20, 2016, 05:56:26 AM by JimDublin »
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Offline JimDublin

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Re: No more AIDS terminology
« Reply #13 on: May 20, 2016, 04:41:52 AM »
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
 
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Offline CaveyUK

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Re: No more AIDS terminology
« Reply #14 on: May 20, 2016, 05:39:22 AM »
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.

Diagnosed 29th Dec, after Home test 27th Dec 2015
29th Dec 2015 - CD4 160, VL 70,363, CD4% 16
Started Septrin 31st Dec & Tivicay/Truvada 12th Jan 2016
9th February 2016 - CD4 245, VL 96, CD4% 19
8th March 2016 - VL 61 (no CD4 taken)
5th April 2016 - CD4 354, VL <40, CD4% 22

Offline Wade

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Re: No more AIDS terminology
« Reply #15 on: May 22, 2016, 09:17:02 AM »
Anythings better than GRID  ;)
HIV 101 - Basics
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 You can read more about Transmission and Risks here:
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 You can read more about Testing here:
 HIV Testing
 You can read more about Treatment-as-Prevention (TasP) here:
 HIV TasP
 You can read more about HIV prevention here:
 HIV prevention
 You can read more about PEP and PrEP here
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Offline CaveyUK

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Re: No more AIDS terminology
« Reply #16 on: May 22, 2016, 09:36:56 AM »
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' :)

Diagnosed 29th Dec, after Home test 27th Dec 2015
29th Dec 2015 - CD4 160, VL 70,363, CD4% 16
Started Septrin 31st Dec & Tivicay/Truvada 12th Jan 2016
9th February 2016 - CD4 245, VL 96, CD4% 19
8th March 2016 - VL 61 (no CD4 taken)
5th April 2016 - CD4 354, VL <40, CD4% 22

 


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