Time to do away with "AIDS" and just call it HIV

[buginme2]

I read a great article the other day (of course I cannot find it now) where the author was proposing doing away with the verbiage "AIDS" as it no longer has any relevancy and is an out of date term.  He proposed replacing it with "advanced HIV disease." 

AIDS was a term that was thought up before the identification of HIV to describe what people were experiencing, as having a cd4 less than 200 or with an OI.  However, once HIV was discovered, it did not replace AIDS.  Now, when a person is able to recover by taking HAART are they still considered as having AIDS once their CD4 goes above 200 and they recover from an OI? 

I feel like the term is one from the past and still carries with it a lot of negative connotations. 

[Hellraiser]

We all have pretty much said the same thing here.  It's an archaic term with little relevance imo.

[Miss Philicia]

Yes! This proposal will surely make the boys on manhunt all the more accepting of you. Fab idea.

[woodshere]

I think it's easier to say "I have the AIDS" instead of "I have advanced HIV disease."

In the long run does it really matter?

[drewm]

My ID doc feels the same way FYI.

[thunter34]

I've got full blown AIDS and I'm not afraid of having to say so.

[Miss Philicia]

I've got full blown AIDS and I'm not afraid of having to say so.

Again? How many times have you allowed it to blossom like that?  And don't start blaming the Baby Jesus cuz I'm not buying that one.

[drewm]

Now, when a person is able to recover by taking HAART are they still considered as having AIDS once their CD4 goes above 200 and they recover from an OI?

The short answer is yes. I still have AIDS. My numbers, now, represent what would be considered HIV and are in a category that I would not have started meds yet, however, once you are dxd with AIDS and while meds can turn the clock back in terms of the numbers, the dx remains. My ID doc says that we are in newly charted territory when it comes to HAART. My case worker expresses concern that changing someone's dx could affect the ability to get meds/treatment in theory because decisions are based on the dx.

[Miss Philicia]

I feel like banging my head on a wall.

[WillyWump]

This thread is infecting me with Full Blown boredom

[thunter34]

This thread is infecting me with Full Blown boredom

I think you mean Advanced Ennui Disease.

[drewm]

[skeebo1969]

   This thread needs some good music to spice things up:

   http://www.youtube.com/watch?v=I3FSRW2qFjM

[tednlou2]

The name of this website is called AIDSMEDS.  Should it be called Advanced HIV MEDS? I know the word AIDS does have psychological and stigmatizing implications.  But, I guess it is what it is.   

I've noticed many docs will take issue with the term "Full Blown AIDS", saying you either have AIDS or you don't--not halfway or slightly blown AIDS.  Although, there is a difference between a CD4 of 200 and 0.     

[drewm]

http://www.youtube.com/watch?v=mEszTzdUMcY

[leatherman]

My case worker expresses concern that changing someone's dx could affect the ability to get meds/treatment in theory because decisions are based on the dx.

having that dx of teh aids for almost 20 yrs has allowed me to have access to health care for almost 20 years which has kept teh aids from killing me during almost 20 yrs. ()

but that's just me though. looking back at my numbers I see that I probably semi-officially had teh aids for about 16 yrs until I reached my first UD and had CD4s over 200. Going that long with the AIDS moniker attached to me, it lost it's power to disturb me. Now it's just a word to describe how sick I once was and to guarantee my meds and health care benefits.

then again, I also like the term "full blown AIDS". It seems a pretty good descriptor of the difference between when you're at home with 150 tcells and 300,000 viral load, feeling sick from teh aids; and when you're in the hospital with 5 tcells, 1,000,000 viral load, on O2, with 3 or 4 IVs of antibiotics stuck in you, puking your guts out, barely able to breathe and doctors are saying your family should get there soon cause you're probably dying of The AIDS. Trust me, when you have "full blown AIDS" you know it. 

[drewm]

having that dx of teh aids for almost 20 yrs has allowed me to have access to health care for almost 20 years which has kept teh aids from killing me during almost 20 yrs. ()

but that's just me though. looking back at my numbers I see that I probably semi-officially had teh aids for about 16 yrs until I reached my first UD and had CD4s over 200. Going that long with the AIDS moniker attached to me, it lost it's power to disturb me. Now it's just a word to describe how sick I once was and to guarantee my meds and health care benefits.

then again, I also like the term "full blown AIDS". It seems a pretty good descriptor of the difference between when you're at home with 150 tcells and 300,000 viral load, feeling sick from teh aids; and when you're in the hospital with 5 tcells, 1,000,000 viral load, on O2, with 3 or 4 IVs of antibiotics stuck in you, puking your guts out, barely able to breathe and doctors are saying your family should get there soon cause you're probably dying of The AIDS. Trust me, when you have "full blown AIDS" you know it. 

Good post leatherman.

[aztecan]

If you want to change the terminology, you will first have to tell the government.

The definintion of AIDS was developed to not only describe a person's medical status to doctors, etc., but to let the government have a barometer to measure when people are eligible for certain services such as disability and Medicare.

Think of AIDS like virginity. Once you've popped that cherry, it ain't growing back.

Once AIDS, always AIDS, if for no other reason than, without care, we will all go there.

HUGS,

Mark
 

[hope_for_a_cure]

Great!  I think I will just call it 'a little condition I have' when I chat with guys on A4A.  The acronym ALCIH will do it!  Hell, most of em just want me to unlock my x-rated pics anyhow.  Once I tell em I've got AIDS they run like cheetahs and click on the BLOCK USER function. 

[hattershateme225]

Dang that is mean@Hope_For_a_Cure They should not do that don't they realize u reap wat you sow I just tell a person I am HIV positive if they don't like then oh well they missing out on a true woman...lol

[mecch]

Newbies have a need to thresh this out.

Every disease has its own history, baggage. Myths about it, reactions, identities applied, treatment, etc etc - these can go on long past their validity. 

Or, sometimes something seemingly outdated is in fact still useful.  An "AIDS" diagnosis is VERY useful for some hiv+ people - actually makes life better or easier.  Newbies may not realise this.

to the OP:  if you can wave a magic wand and replace the "AIDS" diagnosis for a different term, but maintain the benefits of an AIDS diagnosis, OK, by me.

[Dachshund]

When did they change it from da gay flu?

[Jeff G]

Once a Cootie Queen , always a Cootie Queen .

[TakingAChance]

Yes! This proposal will surely make the boys on manhunt all the more accepting of you. Fab idea.

I sure do love that sarcastic reply...Amen

[Theyer]

1-Positively riddled with HIV does not scan as well as Positively riddled with AIDS, so I would like to stick to AIDS please.
mhtv

[TakingAChance]

Great!  I think I will just call it 'a little condition I have' when I chat with guys on A4A.  The acronym ALCIH will do it!  Hell, most of em just want me to unlock my x-rated pics anyhow.  Once I tell em I've got AIDS they run like cheetahs and click on the BLOCK USER function. 

You can't take A4A seriously. Getting blocked for having HIV? The whole site should be Blocked for spreading it. yeah I know people spread it, not web sites. Most of the people on it don't even get Tested on a regular basis. The Ignorant and Uneducated will always prevail on those sites. Anyone using Sex sites should be tested every 3 months, Condoms or no Condom use. Anyone with a profile on A4A or Manhunt is a sexually active man and therefore should test for STD's and HIV every 3 months.

[TakingAChance]

having that dx of teh aids for almost 20 yrs has allowed me to have access to health care for almost 20 years which has kept teh aids from killing me during almost 20 yrs. ()

but that's just me though. looking back at my numbers I see that I probably semi-officially had teh aids for about 16 yrs until I reached my first UD and had CD4s over 200. Going that long with the AIDS moniker attached to me, it lost it's power to disturb me. Now it's just a word to describe how sick I once was and to guarantee my meds and health care benefits.

then again, I also like the term "full blown AIDS". It seems a pretty good descriptor of the difference between when you're at home with 150 tcells and 300,000 viral load, feeling sick from teh aids; and when you're in the hospital with 5 tcells, 1,000,000 viral load, on O2, with 3 or 4 IVs of antibiotics stuck in you, puking your guts out, barely able to breathe and doctors are saying your family should get there soon cause you're probably dying of The AIDS. Trust me, when you have "full blown AIDS" you know it. 

I agree with you man. That said it all. Great answer.,

[hope_for_a_cure]

You can't take A4A seriously. Getting blocked for having HIV? The whole site should be Blocked for spreading it. yeah I know people spread it, not web sites. Most of the people on it don't even get Tested on a regular basis. The Ignorant and Uneducated will always prevail on those sites. Anyone using Sex sites should be tested every 3 months, Condoms or no Condom use. Anyone with a profile on A4A or Manhunt is a sexually active man and therefore should test for STD's and HIV every 3 months.

I interjected humor into that post (you will find that I do that from time to time).  All kidding aside, I do have an account there and it happened once by a guy who lived in Bumfuck Egypt (figure of speech) so really did not matter.  

[TakingAChance]

I interjected humor into that post (you will find that I do that from time to time).  All kidding aside, I do have an account there and it happened once by a guy who lived in Bumfuck Egypt (figure of speech) so really did not matter.  

I got it..I was laughing really. I hear you too. I have used that site. I hate it. I think Humor is the Best medicine Man.

[woodshere]

You can't take A4A seriously. Getting blocked for having HIV? The whole site should be Blocked for spreading it. yeah I know people spread it, not web sites. Most of the people on it don't even get Tested on a regular basis. The Ignorant and Uneducated will always prevail on those sites. Anyone using Sex sites should be tested every 3 months, Condoms or no Condom use. Anyone with a profile on A4A or Manhunt is a sexually active man and therefore should test for STD's and HIV every 3 months.

Not necessarily, I go just to make friends....LOL.

Seriously, doesn't matter if its A4A, Manhunt, bars, parks, adult bookstores, rest stops, if you are sexually active you should be tested.  Regardless, when the time comes to take that dick up your ass you are responsible for your own actions, unless it's with the HIV-  top guy who barebacks and wants to fuck a clean btm, you can take his word!!

[hope_for_a_cure]

guy who barebacks and wants to fuck a clean btm, you can take his word!!

My bottom is still clean.  LOL I scrub with this amazing organic lemon grass and lavender scented exfoliation bar every day! 

[denb45]

My bottom is still clean.  LOL I scrub with this amazing organic lemon grass and lavender scented exfoliation bar every day!  

Does that mean your ass is ripe for eating & fucking    I LOVE a clean ass 

[Buckmark]

I feel like the term is one from the past and still carries with it a lot of negative connotations. 

The term "AIDS" does carry a lot of negative connotations.  So does the term "HIV", arguably less so than AIDS, but not very much less, IMHO.  I don't care if I'm identified as the guy with HIV, or the guy with teh AIDS.  A different word isn't going to make me feel any differently about it.  Disclaimer:  I technically have never reached an AIDS diagnosis because my T-cells only went as low as 225 in the 22+ years I have had this virus.

Here's how I see it:  HIV is a virus.  AIDS is a medical condition, caused by HIV, and having a (fairly) well-defined set symptoms and manifestations used to make the diagnosis.  I don't see the point of swapping out the term "AIDS" for another.

Regards,

Henry

[denb45]

 Henry, you bring up a good point my take, I don't see this disease as being much of anything, I've had it for so long, and I have so many age-related/AVR prolonged health problems, I keep trying to treat them more then the AIDS, AIDS will always be AIDS to me no matter what spin others might want to put on it just my 2 cents  

[Miss Philicia]

Great!  I think I will just call it 'a little condition I have' when I chat with guys on A4A. 

I actually did this for years when out in public with friends.  I'd just say "my condition" and those that knew about "my condition" knew what I was talking about and those that didn't were left out to dry.

[hope_for_a_cure]

Does that mean your ass is ripe for eating & fucking    I LOVE a clean ass  

If you like lemon grass and lavender then I guess it does... OH by the way, I'm clean and UB2 !!

I actually did this for years when out in public with friends.  I'd just say "my condition" and those that knew about "my condition" knew what I was talking about and those that didn't were left out to dry.

In my neg days I always thought I would be devastated if I developed 'the condition' but have surprised myself (even when gasping for air while hooked up to oxygen) by dealing with it better than expected.  

[denb45]

If you like lemon grass and lavender then I guess it does... OH by the way, I'm clean and UB2 !!

Don't worry, if you ass aint clean shaven, I'm not interested dear, I'm not into the ass hairs  

[hope_for_a_cure]

I'm not into the ass hairs  

Ya dont go for the natural dental floss eh?  LOL  I dont either dude!  That was a nice chuckle here at 4:20.

[denb45]

Ya dont go for the natural dental floss eh?  LOL  I dont either dude!  That was a nice chuckle here at 4:20.

I thought you like it 

[Bucko]

I find the phrase AIDS carries a really nice weight to it. When I finally disclosed to my father and his wife a few years back, I went for full impact: it worked.

[CaptCarl]

   Meh... Call me underwhelmed by the whole idea. People won't be fooled by something as simple as a name change, and they'll still discriminate against you if they feel so inclined, whether it's AIDS or Advanced HIV Disease. The baggage will remain. No matter how much you polish that turd, in the end it's still a turd, and everyone knows it.

   Our society tends to do this very thing on a regular basis, and it never works. Look at the history. How many times have various ethnic groups and cultures have changed their preferred names for themselves, in an effort to improve their public perceptions, only to have nothing change?

   From Negro, to Black to African-American, to Persons of Color, racists will still hate you for the color of your skin. Same goes for being Chicano, Latino, Mexican, Hispanic, or Mexican American, people in places like Arizona will still want to deport you to wherever it is they percieve you to have come from. We used to be the Gay Community, then the Gay and Lesbian community, from there we progressed through Gay, Lesbian, and Bi-Sexual, eventually adding Transgendered, then Queer, then Questioning, then Intersexed, then something else that starts with an "I", that I forget. But guess what? Fred Phelps still wants me dead, reagrdless of what we may refer to ourselves as.

   I think more would get accomplished in the world if we stopped wasting energy on things that, in the long run, won't change anything, and spent it instead, on things that actually can make a tangible difference.

   Nor will changing the name of the disease change the way having it makes you feel.

CaptCarl

[Hellraiser]

I think you're getting confused.  Basically what AIDS used to mean has no real relevance anymore.  There is no one way street to immune-compromised status from which there is no return.  So instead of having HIV and then the more specific subclass of AIDS, we all just have HIV.  If you think anyone is tossing and turning at night about having one over the other then you missed the point entirely.  I have AIDS by the medical definition, but it doesn't impact my life any more than being HIV+ does.  Once I get over 200 CD4 (assuming I do) nothing magically changes, it's just cleaning up the nomenclature.

[mecch]

There is a difference between having been diagnosed with AIDS and being HIV+.
Let's not kid ourselves.  
Is anyone in denial about this?
I don't have AIDS but I can take a stab at explaining to people who don't see the point:

The disadvantages of the diagnosis are of course that someone had opportunistic infections related to immune destruction, and also that ones immunity was desroyed.  Duh.

The advantages of having been diagnosed as such are social and personal.
Obvious example, is that the way things are set up in the US for the safety net - an AIDS diagnosis historically and still now means something.

Also the obvious personal meaning is that if someone has an AIDS diagnosis and is still around, this is a survivor and this demands some respect all around and is also a indication to others that this person experienced the above health traumas - so take can be taken into consideration, for whatever.  

So I think we coudl swap out the terms, if you want, but its miserly to a lot of people, living mostly but also the dead, to get rid of the identity.  

Also I think HIV+ people who are new to this or who had relatively manageable experiences so far - I think some of these might be uncomfortable with all the baggage of the AIDS so would perfer it to just go away.  

Rather, the challenge is exactly on HIV+ people who have had an "easy go" --- to inform the public of ALL the different possibilities of living with HIV.  Its not by lobbing off the "AIDS" cases that society is going to come to grips with everything it fears and judges and misunderstands about HIV. 

So rather than pointing the finger at people with AIDS as some sort of problem we should just blab to others about some of the more mundane and manageable aspects of being HIV+ and really, eventually this will move public opinion quite a bit.   It'll always be an STD though, for the most part!  Can't make a silk purse out of a sow's ear.

[GSOgymrat]

So I think we coudl swap out the terms, if you want, but its miserly to a lot of people, living mostly but also the dead, to get rid of the identity.

AIDS isn't an identity, it is a diagnosis. If the medical community decides the term is inaccurate or not useful they can phase it out.

"AIDS" is like "bipolar disorder". They are both a collection of symptoms that have been developed into a criteria agreed upon by medical professionals so that these professionals may communicate more effectively with each other. Bipolar disorder used to be called "manic depression" but was changed to make the diagnosis more accurate by breaking it down into multiple types, e.g. "bipolar I disorder, single episode, moderate". True, public perception is considered when assigning these labels. For example the IQ test was followed by a classification system that used such terms as moron (IQ of 51–70), imbecile (26–50), and idiot (0–25); later these terms were softened and classifications redefined somewhat to mild (IQ of 55–70), moderate (40–54), severe (25–39), and profound (0–24) retardation.Let's keep in mind the real purpose of diagnosis is to help professionals communicate.

[emeraldize]

AIDS isn't an identity, it is a diagnosis. If the medical community decides the term is inaccurate or not useful they can phase it out.

"AIDS" is like "bipolar disorder". They are both a collection of symptoms that have been developed into a criteria agreed upon by medical professionals so that these professionals may communicate more effectively with each other. Bipolar disorder used to be called "manic depression" but was changed to make the diagnosis more accurate by breaking it down into multiple types, e.g. "bipolar I disorder, single episode, moderate". True, public perception is considered when assigning these labels. For example the IQ test was followed by a classification system that used such terms as moron (IQ of 51–70), imbecile (26–50), and idiot (0–25); later these terms were softened and classifications redefined somewhat to mild (IQ of 55–70), moderate (40–54), severe (25–39), and profound (0–24) retardation.Let's keep in kind the real purpose of diagnosis is to help professionals communicate.

Agreed. The importance of the terminology becomes clear when educating at the community level and also to straighten out misuse of the terms (acronyms) and most important misunderstandings.  The language is here to stay -- however, there will always be opportunities to dissolve misinfomation, bias or stigma resulting from or related to its use. That's where I suggest spending any energy.

[Basquo]

I think you're getting confused.  Basically what AIDS used to mean has no real relevance anymore.  There is no one way street to immune-compromised status from which there is no return. 

Really? Tell that to my friend who barely has double-digits t-cells and now has to be on SIX meds and hasn't seen any improvement in YEARS despite compliance. Then ask him WTF his problem is and why he still doesn't follow your two-way street analogy. Then ask me if I worry every day that that he's just going to collapse one day...

...sorry to be so blunt but there ARE still people out there who die from AIDS. And it's not always a compliance, access, or denialist issue.

[denb45]

Really? Tell that to my friend who barely has double-digits t-cells and now has to be on SIX meds and hasn't seen any improvement in YEARS despite compliance. Then ask him WTF his problem is and why he still doesn't follow your two-way street analogy. Then ask me if I worry every day that that he's just going to collapse one day...

...sorry to be so blunt but there ARE still people out there who die from AIDS. And it's not always a compliance, access, or denialist issue.

Thanks Basquo 

Hey Trey, have you EVER seen anyone DIE of AIDS? I as well as many others on this forum has, dear, it's not pretty, YES people still die of AIDS, be careful making such a rash statement  

[Dachshund]

Really? Tell that to my friend who barely has double-digits t-cells and now has to be on SIX meds and hasn't seen any improvement in YEARS despite compliance. Then ask him WTF his problem is and why he still doesn't follow your two-way street analogy. Then ask me if I worry every day that that he's just going to collapse one day...

...sorry to be so blunt but there ARE still people out there who die from AIDS. And it's not always a compliance, access, or denialist issue.

While he's at it Hellraiser might want to read about Christine and Katie in In Memoriam.

[Assurbanipal]

I think you're getting confused.  Basically what AIDS used to mean has no real relevance anymore.  There is no one way street to immune-compromised status from which there is no return.  So instead of having HIV and then the more specific subclass of AIDS, we all just have HIV.  If you think anyone is tossing and turning at night about having one over the other then you missed the point entirely.  I have AIDS by the medical definition, but it doesn't impact my life any more than being HIV+ does.  Once I get over 200 CD4 (assuming I do) nothing magically changes, it's just cleaning up the nomenclature.

There's two issues here:

1) Others have called you on the assumption that everyone has good results from the medications.  

2) Even for those who have good results from the medicines, AIDS continues to affect their lives, and it will continue to affect yours:
 - you (and I) are susceptible to faster disease progression if our drugs are interrupted
 - we are more likely to have any number of side effects and bad results
 - CD4 nadir predicts increased likelihood of a vairiety of potential bad results

It's great to be sunny, to be optimistic, to not let AIDS get in your way. AIDS does not control you.  That's important.

But AIDS is a serious condition, and the fact that you have controlled it with drugs for now doesn't mean it has gone away and does not impact you..

[Jeff G]

I wish someone would explain to me why the new generation of people with HIV/Aids so desperately want to rewrite or redefine the history of Aids  . I'm not trying to be snarky , I'm seriously curious to know the answer .