Do we still need the term "AIDS?"

[Boo Radley]

In another thread a couple of people mentioned the common fact that many people think all of us who are HIV+ have AIDS.   Technically I have AIDS although I've never had an OI, but my CD4 count dropped below 200 so my designation changed from being HIV+ to having AIDS. 

When I was still working in the late 90s and into 2001 I started using the term "HIV disease" because it is a truly more accurate description.  Part of my reason was to dispel the myth of "asymptomatic" HIV+ people as being in perfect health.  Most of us with HIV are rarely "asymptomatic" since our bodies are locked in a never-ending battle with the virus and symptoms such as CD4 counts and viral loads chart the course.

Saying AIDS packs a wallop that "HIV disease" doesn't but since AIDS has become "a manageable chronic illness (sarcasm alert)" maybe we could re-educate people about the reality of HIV disease from infection onwards. 

Or maybe not...

Boo

[Ihavehope]

The word AIDS is almost always associated with death and illness. It is bothersome to me that from now on I am considered someone living with AIDS and not HIV because of my CD4 counts are 200. My nurse said that if I would have been 201, clinically I would be HIV positive but at 200 I have AIDS. UGH!!!!!!

Drama.

[Life]

Boo,  I wonder..  If I can't get over the terms HIV / AIDS in my own mind, I don't think I have a chance in hell of convincing someone else.   Yet...

[Cliff]

Someone (maybe Matt/Newt) mentioned that there is a tendency to stage HIV, much like cancers.  That sounds interesting.  AIDS seems so vague now.  Technically my numbers have dropped (previously) below 200, does that mean I have AIDS and am no longer considered just HIV positive?  I wouldn't think so.  Sometimes I hear people use AIDS & HIV interchangeably.  I usually know what they are talking about (as in knowing when they are referring to AIDS because of disease progression as opposed to AIDS, as in someone having the virus that causes it).

[Boo Radley]

Technically my numbers have dropped (previously) below 200, does that mean I have AIDS and am no longer considered just HIV positive?

Cliff, in the USA at least, the CDC (or NIH or whoever it was!) changed the definition of AIDS in the late 80s or early 90s to include anyone whose CD4 count dropped below 200.  The reasoning was, I believe, that at 200 CD4s an infected person should begin HAART before allowing the count to dip lower and bring on OIs.   A CD4 count of 200 is a generally accurate indicator that immune breakdown is or soon will be occurring so the distinction helps guide medical providers and patients with deciding to start HAART.

I have personally come to appreciate the distinction because the label "AIDS" prevents my long-term disability insurance provider from declaring me well and stopping payments.  The fact is I couldn't hold down a job for long, even a part-time one. I regularly go through periods when I sleep for 12 - 18 hours a day and feel like crap the entire time.  I've been dealing with daily fatigue since 1994 and before I lost my job in 2002 I had trouble working a full day without being completely wiped out after work.   My employer allowed me to work shorter days and do work from home and that helped but I contracted hep B in late 2001 and after that I slept through most of the next 3 years.

Boo

[sweetasmeli]

In Greece if you say to someone (in Greek) "I have hiv" they look at you blankly. If you say (in Greek) "I have aids" they head for the hills! Well, not all Greeks of course...What I mean by that is here there isnt actually a linguistic equivalent for the term 'hiv' (well there is but not using 3 letters of abbreviation and it is a term only usually used by doctors) so the term 'hiv' is certainly not used universally here. But you say the word 'aids' and, like I say, hill-dwellers look out! So without the term 'aids' the Greeks could be lost! In Greek they use the term 'aids' to mean 'hiv' here too, regardless of where you're at with your numbers or health.

Which - on a wobbly day - can be annoying.

I personally dont care much for either of the terms hiv or aids and, since my diagnosis, have always refused to give them any extra recognition by capitalising them either! Except when I forget...

By the way, I thought an aids diagnosis had to include a CD4 result of less than 200 plus an opportunistic infection. Or does it still depend where you are in the world? Thats something that always gives me pause for thought: that someone could fly out of one country with hiv and land in another with aids!

--Melia quickly scans post to check for stray capital letters running amock--

Yeia kai hara! (Greek for health and happiness)

Melia

[bravebuddharich]

My concern about changing the words is that funding will decrease, and many of our lives will go into chaos when politicians, deciding we aren't going to die after all, start pulling funding - so they can spend the money on occupying more foreign countries besides Iraq (Iran, other muslim "other" countries, with brown people rather than the preferred white; this is meant sarcastically, btw).

Also, this myth that people don't die anymore is only a myth. Four people I knew died this past year, including one former boyfriend!! Granted, there are extenuating circumstances, and things are SO much better than they were in the 80's, early 90's - YES YES YES!!! But it bugs me when we get the Andrew Sullivans of the world, who haven't been poz all that long, saying "it's over".

AIDS = Acquired Immune Deficiency Syndrome - well, that's accurate, IMO. HIV specifies its a virus; AIDS specifies the immune system is down. These are accurate for everybody who is "poz" (a word that some don't like, either, but I do)

Is it the stigma attached that we don't like or the words themselves or something other than that? I think we are stuck with it, for better or for worse, IMO it's for the better as far as funding and politics is concerned!

[Boo Radley]

Melia,

In the USA a few years ago the definition of AIDS dropped the co-requirement of an OI when the CD4 count drops below 200.  IOW, the previous definition required a CD4 of <200 and an OI.

bravebuddharich,

Please never mention Andrew Sullivan's name in a thread I start or even participate in, or, for that matter, even read!  My blood pressure rises to dangerous levels when I see his name.  He is a prime example of why I should have a euthanasia button to help rid the world of obnoxious and dangerous weeds.

Boo

[racingmind]

I think the stigma surrounding AIDS was largely cultivated by the media.  In the beginning, when very little was known about HIV/AIDS, and people were dying left and right because there was no treatment, it was seen as some kind of sexual (gay) plague.  All the films that were made as a reaction to the uncertainty of the new epidemic only served to accentuate the stigma attached to the disease.  The thinking was "people who got it, deserved it."  Now, 25 years later, where it affects EVERYONE, you would think that the stigma would be diminished a bit.

Still, I haven't told my immediate family because I am afraid they will think differently of me.  I am much happier to think of myself as being HIV+, rather than having AIDS. 

I don't see the world changing their outlook on the AIDS pandemic anytime soon.  I am still trying get over my realization that I have contracted this virus and become one of "them."   

Do we need the term AIDS?  Yes...  Without it, the government might redirect funding (tax dollars) into even more military intervention in countries we shouldn't be in.   The stigma is worth it if the disease is still regarded as extremely serious and funded as such.  It's gotten better in 25 years, but it's so far from being over....

[AlanBama]

I think the whole thing is too confusing.   HIV Disease makes more sense to me.

When I first got an AIDS diagnosis, it was due to an O.I. (MAC)....which at that time, was what you had to get to have a diagnosis.   It was later revised to be a T-cell count of 200 or less, which I had had WAY prior to my AIDS diagnosis, so I really had AIDS before I techinically had AIDS.....DUH.......

[aupointillimite]

WHO stages AIDS like this.

    * Stage I: HIV disease is asymptomatic and not categorized as AIDS
    * Stage II: includes minor mucocutaneous manifestations and recurrent upper respiratory tract infections
    * Stage III: includes unexplained chronic diarrhea for longer than a month, severe bacterial infections and pulmonary tuberculosis
    * Stage IV: includes toxoplasmosis of the brain, candidiasis of the esophagus, trachea, bronchi or lungs and Kaposi's sarcoma; these diseases are indicators of AIDS.


The CDC calls it "AIDS" in one of the two following cases.

According to the US CDC definition, one has AIDS if he/she is infected with HIV and present with one of the following:

A CD4+ T-cell count below 200 cells/µl (or a CD4+ T-cell percentage of total lymphocytes of less than 14%).

or he/she has one of the following defining illnesses:

    * Candidiasis of bronchi, trachea, or lungs
    * Candidiasis esophageal
    * Cervical cancer (invasive)
    * Coccidioidomycosis, disseminated or extrapulmonary
    * Cryptococcosis, extrapulmonary
    * Cryptosporidiosis, chronic intestinal for longer than 1 month
    * Cytomegalovirus disease (other than liver, spleen or lymph nodes)
    * Encephalopathy (HIV-related)
    * Herpes simplex: chronic ulcer(s) (for more than 1 month); or bronchitis, pneumonitis, or esophagitis
    * Histoplasmosis, disseminated or extrapulmonary
    * Isosporiasis, chronic intestinal (for more than 1 month)
    * Kaposi's sarcoma
    * Lymphoma Burkitt's, immunoblastic or primary brain
    * Mycobacterium avium complex
    * Mycobaterium, other species, disseminated or extrapulmonary
    * Pneumocystis carinii pneumonia
    * Pneumonia (recurrent)
    * Progressive multifocal leukoencephalopathy
    * Salmonella septicemia (recurrent)
    * Toxoplasmosis of the brain
    * Tuberculosis
    * Wasting syndrome due to HIV


Since the "S" in "AIDS" actually describes a clincal syndrome... and since it's been shown that when one gets to around 200 CD4s, the risk for an OI increases dramtically, and since an OI does indicate major immune system suppression I think it medically makes sense to keep the definition around.

Just calling it "HIV disease" is a bit too broad, I think.  There is a major difference between having 600 CD4s and 150. 

[Boo Radley]

The stigma is worth it if the disease is still regarded as extremely serious and funded as such.  It's gotten better in 25 years, but it's so far from being over....

No disagreement from me on this angle -- HIV/AIDS should carry no stigma: a virus is not a moral judgement.  My point is almost all of us infected with HIV are "ill" from the moment of infection. We are usually physically unaware of our body's daily battle against HIV so we're "asymptomatic."   No one is asymptomatic (well, there are LTNPs but don't bet your luck you'll be one of them!).   Once infected most of us become symptomatic but the symptoms are undetected by the infected person who, in many cases, will eventually see a point at which CD4 count drops below 200, making HAART mandatory.   Allowing one's CD4 count to get too low (there is variation from patient to patient as to what "too low") opens one for OIs.  Many OIs now have prophylaxis and treatments unavailable in the earlier years of the epidemic but eventually HIV unchecked destroys the immune system and an OI (or more) causes the person's death.

Shortly after you're infected there are obvious symptoms like a viral load, which one has only if one is HIV+, and possibly a lowered CD4 count.  Swollen glands, fatigue, sleep problems, and other noticeable symptoms can also occur at any time after infection but we tend to shrug them off and go on living. 

Every day doctors authoritatively tell new patients HIV disease is a chronic manageable illness even though they know that's not strictly true and probably won't be for 10 or more years.  It is true HAART has become a lot simpler but in most cases the "newer" drugs are combinations of existing HIV drugs (e.g., Trizivir is 3TC, abacavir, and AZT;  Atripla is SUSTIVA® (efavirenz), EMTRIVA® (emtricitabine) and VIREAD, etc.).  There are many promising potential therapies in the experimental or early testing phases but how many truly new drugs or treatments have come out in the last 5 or so years?  How many new therapies will be introduced in 2007 and 2008?

Sorry for my rambling but if I'm going to hijack a thread it may as well be mine.

Boo

[Queen Tokelove]

Hmm, interesting topic. I don't know the ins and outs of either term. It took me awhile to accept that I was hiv +. Just being that alone was enough to throw me into depression. I learned to accept it and live with it. So technically I am hiv+ because my cd4 is above 200 and I have never had any O.I's.

When the time comes when mycd4 drop below 200, I will have AIDS. It will still shock me even though it shouldn't because I have lived this long being +. To me it is just part of the disease where your body just can't take it anymore even with the help of meds. Maybe I'm just looking through rose colored glasses, I don't know. Bottomline when it's your time to go, you gotta go, whether you have hiv/aids, cancer, diabetes, or whatever else. We were not meant to be immortal, so I have accepted it to be a part of life.

[DanielMark]

Since the "S" in "AIDS" actually describes a clincal syndrome... and since it's been shown that when one gets to around 200 CD4s, the risk for an OI increases dramtically, and since an OI does indicate major immune system suppression I think it medically makes sense to keep the definition around.

I agree! I've been in and out of the "clinical" state of AIDS.

These acronyms don’t bother me, one way or the other, but then neither of my two disability pensions will be affected living here in Canada. That it would in the US is atrocious.

Daniel

[Boo Radley]

... We were not meant to be immortal...

Queen A, speak for yourself, please! 

"I've been shaved, plucked, and moisturized, sweetie!  This carcass ain't croaking or I'll sue!!"

Boodina

[marco23]

Personally, I think anyone who isn't familiar with HIV, doesn't hear "I'm HIV positive" all they hear is "I have AIDS".

[marco23]

Boo,
your sense of humor..beautifully shaved,plucked, moisturized and classic!

[aupointillimite]

I understand what you're saying Boo. 

I'm not going to pretend like I'm completely "asymptomatic."  But since my symptoms are limited to some swollen glands and fatigue... I might as well be.  You're completely right, we are all, in a technical sense, constantly ill since our bodies are always fighting off this infection.

However, my HIV disease is nowhere near as serious as someone with what we still call AIDS.

[aupointillimite]

Personally, I think anyone who isn't familiar with HIV, doesn't hear "I'm HIV positive" all they hear is "I have AIDS".

You'd be surprised.  Most people I've come into contact with are pretty aware of the difference.

[heartforyou]

With 7 CD 4 cells left I was still working....

I personally think that telling someone "I have HIV" just is less threatening then saying "I have AIDS".
But correct, many people still don't know the difference.

I have risen my CD4 count from 7 tot 950 at some point. The proof that a body has hidden capacities to recover.
Ask some more of our long time survivors.

hermie

[Boo Radley]

WHO stages AIDS like this.

WHO is a communist front organization and the United States is sovereign above all others!!  Heil Dubyah!!

Just calling it "HIV disease" is a bit too broad, I think.  There is a major difference between having 600 CD4s and 150. 

Don't call me a "fat old broad" again, punk.

The difference between 150 and 600 CD4 cells is "late stage" and "early stage" HIV disease (remember there are people holding at 150 CD4s who have had no OIs).  Like cancer, HIV disease has stages based on the prognosis for the patient.  In early stage disease the patient's body deals with HIV.  In the HAART stage the person is undergoing chemotherapy.  In late stage disease a person may be ill with one or more OIs that may or may not be terminal or may have a CD4 count under 200 as this is an adequate (albeit imprecise) indicator of imminent immune breakdown.

I just threw the question out and don't really feel strongly about a "right answer."   So far there have been responses covering the divergent views.  Hurrah for civilized discourse. 

As someone who's lived with HIV so long I believe there is still much ignorance, even among poz people, about the fact that once you are infected your body is battling HIV 24/7/365.  Referring to the so-called asymptomatic phase, I think it's misleading because there are clinical symptoms of HIV disease shortly after infection.  If you are HIV+ people think you are well but if you have AIDS they know you are sick (and probably think you'll die soon).  The general public doesn't understand the course of HIV disease.   

But like I said, this isn't an issue we need to get viscous over.  Unless it's the right kind of viscous...

Boo

[aupointillimite]

  Unless it's the right kind of viscous...

Boo

You hit me with a flower!

You do it every hour!

Sorry... had to throw Lou Reed out there...

And I'll call you what I damn well please... "any old junk taken, why don't you go trade yourself in?"   

I don't feel too strongly about it either... but even with cancer, most people hear "cancer" and I would think generally the immediate thought is "you're gonna die."  Much like with hearing "AIDS." 

I wouldn't begrudge the general public not knowing too much about HIV disease progression... they don't have to deal with it.

And you're right, 200 CD4 cells is an imprecise marker... but I think it was chosen because the chances of getting an OI greatly increase starting at 200 CD4s regardless of individual patient circumstances. 

[Boo Radley]

Boo,
your sense of humor..beautifully shaved,plucked, moisturized and classic!

Thanks, Mark!  I can't take credit for the phrase since it's another of many Absolutely Fabulous quotations I use in place of real conversation or writing.

I've never had an original idea in my life, except for the "Sweet Old Bob's Auto-Potty" I tried to market 10 years ago.  It seems there were a few automoblie accidents and a death or 50 so I had to pull the product even though there was never anything besides circumstantial evidence.  I'll bet many people about to slam hard into an 18 wheeler defecate before they die.  That proves nothing.

Boo

[aupointillimite]

I've never had an original idea in my life, except for the "Sweet Old Bob's Auto-Potty" I tried to market 10 years ago.  It seems there were a few automoblie accidents and a death or 50 so I had to pull the product even though there was never anything besides circumstantial evidence.  I'll bet many people about to slam hard into an 18 wheeler defecate before they die.  That proves nothing.

People at my job think I'm crazy now because I can't stop laughing at this.

[Boo Radley]

And I'll call you what I damn well please... "any old junk taken, why don't you go trade yourself in?"   

Well!!  I've reported your petite derriere to the moderators so prepare to be banned permanently!!  Such impertinence.

"Look, it's that old slag in the papers last week!"

Bootsy

[aupointillimite]

"Look, it's that old slag in the papers last week!"

I'm sure I could find a way to make it up to you.

"Well, you take a pot of scented honey mixed with some goats cheese yoghurt, sprinkled with almonds from the Atlas Mountains, spread it all over your naked, nubile, young body, and allow a man, old enough to be your father, to lick it off..."

[Londonguy]

I guess it's important in the US because of the health care system over there.  Personally I hate the fact that even when (hopefully) my CD4s get back above 200 I will technically still be diagnosed as having AIDS.  AIDS is just a much more emotive word....I still get terrified at the thought that I have AIDS at 22

[Boo Radley]

"Well, you take a pot of scented honey mixed with some goats cheese yoghurt, sprinkled with almonds from the Atlas Mountains, spread it all over your naked, nubile, young body, and allow a man, old enough to be your father, to lick it off..."

Name the time and place.  I also expect priapic action and you'd better come... 

I may have to substitute low-fat yogurt since I have to watch how much fat my liver processes before it goes into a semi-morbid state and makes me ill. 

Dirty Uncle Boo

P.S. I swallow.

[manchesteruk]

I definately think we still need the term AIDS.  A lot of people do seem to get confused about them though i've noticed.  I think if you take the term AIDS away it's almost suggesting it's not a big deal anymore and thats a very dangerous thing to do! 

[aupointillimite]

Name the time and place.  I also expect priapic action and you'd better come... 

I may have to substitute low-fat yogurt since I have to watch how much fat my liver processes before it goes into a semi-morbid state and makes me ill. 

Dirty Uncle Boo

P.S. I swallow.

Time and place?

Marrakesh.  Is Tuesday good?

[AlanBama]

I'm an "End Stage" AIDS patient....and it's been a very L-O-N-G stage.....

more than 15 years.

[northernguy]

I'm not sure it's still helpful.  For instance, when I was researching my skin problems on the net I'd come across nuggets like "85% of people with AIDS develop sebborrheic dermatitis", where HIV and AIDS are used interchangeably.   You don't graduate from diabetes to some "syndrome" do you?  Doesn't the term really arise from pre-HIV indentification days when the medical community was describing a syndrome they couldn't attribute a cause to?

Telling someone you have AIDS is far more frightening for them (and me) than saying you have HIV.  I realize there are disability issues, but people in that field could develop guidlines for disability based on the severaity of your HIV-related conditions, rather than the term "AIDS".

[aupointillimite]

I don't understand why some people have difficulty with AIDS, because it's so terrifying to hear or because of the stigma.

Am I wrong in thinking that AIDS is still really serious?  Of course it's scary, they can't fix it yet!

And just because "AIDS" has so much (well-earned) emotional baggage doesn't mean we should clean it up.  It describes a condition of advanced HIV infection. 

Changing "cancer" to "shiny, happy, pretty cells gone wild" or AIDS to "super fun immune system issue" wouldn't change anything about what they are.  And what they are can be fucking deadly.

[AlanBama]

Benj, you are right, AIDS is very serious.

I tend to be "user specific" when I refer to my HIV disease.....if I think someone would "hear it" better if I say "I'm HIV positive", I will say that rather than "I have AIDS".....

Of course, if you're going for the sympathy vote, "I have AIDS" is definitely the way to go!   Some people took exception to me stating that I use the word "AIDS" however I need to, awhile back in the forums......that is of course, their right.   Meanwhile, I still continue to use the term however it best suits my needs.   One of the perks of being a long term survivor, if there are any....

[koi1]

Yes we still need the term AIDS. AIDS means that you have progressed to a state where your body can no longer keep the virus at bay without medications.

Sure there are people who can go on drug Holidays, but that's all it is, eventually they will need to rejoin the meds club.

And yes there are people who never develop AIDS. Hell there are people who are exposed to it and never get it. These people are a rare bird.

If we want there to be continuing research on a disease that still kills and will kill most people without treatment we need the term AIDS. We just need to work on the stigma that it still carries. I guess the test is when we no longer feel shame for having it, disclosing it, and publicly acknowledging. I have not reached that point, but it is definitely the attitude of the general public that makes me uncomfortable. At work people know I am gay, but not that I have AIDS.

And yes it is managable for most and not all, and certainly unmanagable in the third world, but I still feel like shit, and anxious as hell about it. Some say this will get better. I don't yet believe it. We can't switch it to a more benign name, and still expect there to be vigorously researched. I mean there are few of us who are complacent with the idea of taking these meds for life. I still hope that there will be a cure or less toxic meds on the horizon.

Call me a cry baby.

rob

[aupointillimite]

Benj, you are right, AIDS is very serious.

I tend to be "user specific" when I refer to my HIV disease.....if I think someone would "hear it" better if I say "I'm HIV positive", I will say that rather than "I have AIDS".....

Of course, if you're going for the sympathy vote, "I have AIDS" is definitely the way to go!   Some people took exception to me stating that I use the word "AIDS" however I need to, awhile back in the forums......that is of course, their right.   Meanwhile, I still continue to use the term however it best suits my needs.   One of the perks of being a long term survivor, if there are any....

I do this, too.

When I'm trying to force sympathy for whatever reason... generally to my benefit... I use the term AIDS, even though I don't have AIDS.  Like to a debt collector, for instance.    

I see nothing wrong in manipulating other people's willful ignorance.

[blondbeauty]

According to my Dr. my condition is : HIV infection. Stage: IA

[Boo Radley]

Marrakesh.  Is Tuesday good?

OK, but you may regret it:

"I still don't think somehow it was right to sell her off like that."

I should fetch a great price on the white slave market for your little bootay.


"That's the last time I step foot into the toilet bowl of Northern Africa!!  How dare those people spit at me!!"

Boo

[RapidRod]

You will know for sure your classification is AIDS, when you get your notice from your State Health Department. You will get a packet from them with all the state and federal assistant programs available to you. Which explains each one and how to file. Which I didn't have to file for a one because it was done by the OSU ID Social Workers Department. You are even connected to the local ASO that covers your area.

[Ric Wilke]

Okay Folks,

I know I've been away for a while.  I just surfaced again a few days ago after a very big health scare. Here's my take on this topic.

I have AIDS. Today my viral load is undetectable and my CD4 count is 478, but in 2001 my viral load was just under 500,000 and my CD4 count was 56.  I could have named them after those friends who I have lost to this disease. In spite of my good numbers, I still have AIDS.

Does this label upset me?  No fuckin' way.  It give me the the strength to come out of the "AIDS Closet".  I consider myself a survivor and intend to continue my open admission that I have AIDS.

To answer the question, "Do we still need the term 'AIDS'?"  Yes we do.  It defines us as who we are and what we have done to get here today.

Do I have AIDS?  You're damned right I do.  Am I a proud survivor?  Don't even go there.

Join me in our fight, Ric