POZ Community Forums
Main Forums => Living With HIV => Topic started by: David_CA on February 20, 2007, 09:58:43 pm
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In reading the discussion in Wesley's post about the various definitions of AIDS, I began wondering which was correct. I always thought that there had to be two or more 'things' for an AIDS diagnosis. From what I've read (in the Lessons on this site, among other sites), it does take two: being HIV+ is one, and having either an OI or a CD4 less than 200 is another. If this is correct, I have AIDS, and I didn't even know it! I was in the hospital a few months ago with PCP, 284 t-cells, and HIV. I've not read anything in any of my medical records (from my week in the hospital) or labs to indicate AIDS. I'm going to be kinda disappointed if I have AIDS and nobody told me!
David
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I always thought that there had to be two or more 'things' for an AIDS diagnosis. From what I've read (in the Lessons on this site, among other sites), it does take two: being HIV+ is one, and having either an OI or a CD4 less than 200 is another.
Yes PCP is an OI; you had AIDS
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Yes PCP is an OI; you had AIDS
Correction: I have AIDS. I don't think the diagnosis changes back to HIV+.
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David it's 200 or less, with a percentage of less than 14 or 200 or less with an OI.
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David it's 200 or less, with a percentage of less than 14 or 200 or less with an OI.
That's what I always thought, but I can't find that definition used. It would certainly make more sense than just HIV + an OI.
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google CDC 2005 surveillance. You'll find the definition there.
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Correction: I have AIDS. I don't think the diagnosis changes back to HIV+.
I stand corrected
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David it's 200 or less, with a percentage of less than 14 or 200 or less with an OI.
I just went to the CDC site it is an absolute cd4 count of 200 or less OR a cd4% of 14 or less (not and) -- no OI needed for either. An OI, from their list, is all this is needed also (regardless of absolute cd4 or cd4%).
Having said that -- these guidelines were developed back before there was any real effective treatment and was really about "staging" the disease progression. Once you had AIDS, you didn't usually go the other way. Things are different today, so it is probably way past time for the CDC to "revisit" the meaning of these stages for those lucky enough to have effective treatment available to them.
OK -- just saw some more posts here, but I googled CDC 2005 Surveillance, glanced through the report and am still only seeing 200 OR 14%, not AND. I know I'm not infallible, so I'm not saying you're wrong, but help me find the article your quoting from, I'd love to see it.
thanks,
Mike
Mike
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While there is a 'definition' of AIDS - there also is the question of once you get diagnosed with AIDS, but then recover from an OI or your T-Cell count goes from under 200 to 201, are you then only considered HIV Positive again? My doctor for instance often writes that I have HIV Disease. Is that somewhere inbetween having HIV and having AIDS, even though I have been diagnosed years ago as having AIDS and all my paperwork that tries to categorize my reason for my doctor visit gets the code 042 - AIDS. So, yes, confused as usual.
- david
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My doctor for instance often writes that I have HIV Disease.
My doctor does the same thing.
However, AIDS adversely affected my immune system. I've heard immune systems are then "never the same" [as before]
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Here's the most recent CDC surveillance report. 2007, but the data is from 2005:
http://www.cdc.gov/hiv/topics/surveillance/resources/reports/2005supp_vol11no2/commentary.htm (http://www.cdc.gov/hiv/topics/surveillance/resources/reports/2005supp_vol11no2/commentary.htm)
It repeats the 1993 definition. I can find no evidence of it having changed.
The 1993 MMWR defines AIDS as being HIV positive and having a CD4 count less than 200, OR a CD4 percent less than 14, OR HIV positive and having an "AIDS defining illness", such as repetitive pneumonia, invasive cervical cancer, or pulmonary tuberculosis. Read about it here:
http://www.cdc.gov/mmwr/preview/mmwrhtml/00018871.htm (http://www.cdc.gov/mmwr/preview/mmwrhtml/00018871.htm)
Why is this so important to you? It is just a means for the epidemiologists to decide which column to put you in on their reports. You meet certain criteria, you get reported to the CDC as HIV, and you go in one column; you meet other criteria, and you get reported as AIDS, and you go in that column. You have HIV and get worse off, they switch you into the AIDS column. To my knowledge, they never move you out of the AIDS column of the report, but is that so bad?
Your doctors will treat you based on your clinical presentation, not on which column the CDC wants to put you in. So it's really not that important in our daily lives.
-Whizzer
(who had a CD4 percent of 11 a year ago, and is most likely in the AIDS column)
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My doctor says that I am HIv+ or something along the lines of Immnio something compromised. I just can't get a handle on the medical terms.
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I find it interesting that everybody is trying to define this benchmark..... What does it matter??
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DavidinCA92284, in the State of Ohio once you are classified as having AIDS it doesn't change. One of the reasons is the assistance programs. Does your Dr. write HIV or Advance HIV disease?
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Eric,
It really only matters to the bean counters. AIDS drives funding.
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I agree... If I say I have aids and my meds become cheaper, well then, I have aids... Else, its just a word.
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Or for you qualify for medical assistance.
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Point taken..
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I use AIDS and HIV interchangeably and at my whim when discussing my health with people otherwise unaffected with the virus. Whereas i find "HIV" might raise an eyebrow, "AIDS" makes them sweat. And sometimes I wanna see them sweat.
Brent
(Who knows when to roll 'em, knows when to fold 'em)
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HIV, AIDS - personally, I don't really care - very interchangeable these days. Since my diagnosis I have had acute HIV disease, AIDS(due to my high viral load and recurrent pneumonia) etc etc. Like Bucko, I use both, it all depends - AIDS makes some people uncomfortable, so I like that sometimes.........
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Well,
Here's a new one to consider. Let's say the Hep A vaccine is responsible for the wacky result I got of 139 CD4 and 30%.
Now, if I go in tomorrow and my counts have returned back to what they were at 1 month ago to 350 range (the immunization being the potential problem) then did I ever have AIDS?
This makes no sense to me at all. I'm not sick. So far can't see any lab issues that would be HIV/AIDS related.
So hypothetically, could I have a medical anomaly or what?
I don't have an OI's that I'm aware of, although with this mess the stress will probably kill off my remaining Tcells. I'll end up with 0 CD4 and 100% at this rate. So then am I just dead and don't have AIDS?
I think the guidelines are crap. I think we all have the same virus, some with medical issues, some not.
I believe those guidelines were developed primarily for qualifying for SSD and other programs. And, if I qualify now from this mess I may have to look into it cause I think I'm loosing my sanity now ; )
Oy, You know I'm gona be asking my doc this one soon. I have the feeling he will want to use some terminology like HIV disease so I don't sue him for malpractice for telling me not to take meds and ending up with AIDS.
Rationally, I think the idea of HIV/AIDS is ill defined. And, why on earth would you always have AIDS if your CD4 rises above 200 and stays there?
It's all technical jargon to me. Cellular discrimination.
Then again, I'm under a lot of stress so I'm not making the most sense. Love to hear others ideas?
Bottom line to me, it's all a big numbers game.
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The AIDS diagnosis is good for people who need benefits etc, so Wesley, technically I'm sure right now you would qualify for some. Even though some people's numbers go up after the initial AIDS diagnosis, there are those who continue to have medical issues, which make it difficult or impossible to work. So I guess some guidelines are needed, but I doubt very much that healthy individuals, who once had their CD4s plummet are walking around thinking I have AIDS - we are ALL HIV+ at the end of the day and yeah, it is a numbers game(as far as the AIDS diagnosis is concerned, meaning someone with 250CD4 could have more obvious health issues that someone with 180), but it is an indication of the state of your immune system.
All we can do is try to remain as strong and healthy as we can - physically and mentally.
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I find it interesting that everybody is trying to define this benchmark..... What does it matter??
Historically it had some basis. In Canada HIV was a reportable disease meaning it was reported to Provincial heath authorities but the federal authorities were not required to be notified. This has changed in the last few years with HIV now a federally notifiable disease in almost every Canadian jurisdiction. An AIDS diagnosis was always a federally notifiable disease and counted in the overall statistics while that wasn't necessarily the case with HIV.
I believe the same concepts were used in the US, with some states not required to federally report HIV but required to report an AIDS diagnosis. In fact I believe Canada adopted the initial reporting model and only modified it in the last 4 years or so in recognition that the distinction between HIV and AIDS wasn't quite so meaningful any longer. I'm not certain but I also believe the US binds it more closely to funding and state benefits. Canadian health care funding uses a different model in apportioning how much funding each Province gets for its needs.
Essentially its just another one of those issues that is dated and for many, less meaningful. For what its worth, once a label of AIDS is assigned it isn't removed even if the issued that resulted in the assignment is resolved.
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I think you're missing the bigger point on this one, no doubt stressed by some news that shocked you into reconsidering your notions of mortality. It is not emphatically NOT a mere numbers game. It is your life, a life you are obliged to play out in full in its entirety. If you think bad news is tough, wait until you cannot breathe or your body is sending signals of pain the likes of which you've never previously imagined, indefinitely.
The reality is that we play the card we are dealt, no chance to redo because you prefer face cards to deuces. But as any good poker player knows, three or four deuces beat almost everything else.
I just reserve the right to use other's prejudices to my advantage occasionally. What else does one do with two pair?
Brent
(Who can't shuffle worth a damn)
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Bucko,
I'm LIVID that my doctor convinced me to wait on drugs. So now I have AIDS. I don't care personally either way except it makes other issues complicated.
Right now I don't need any more complications ; (
But, I'm not mad at you or my doc, just me!
I still want to know from my issue do people consider that AIDS if next labs are back to previous levels with the vaccine added?
Just curious.
I don't even know if that is the issue yet. Maybe I have cancer too, so I am way stressed out. Although cancer counts as an OI?
Peace,
Wesley
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Bucko,
I still want to know from my issue do people consider that AIDS if next labs are back to previous levels with the vaccine added?
Darling, that's not lucid, but considering your current stresses you're forgiven.
And you're missing my point, which is that, having joined the survivor club, use your status as a weapon against the ordinary, unimaginative and hum-drum. You are now, as your mother always promised you really were,"special".
Use your gifts for good or evil as you see fit, but use them when the chance approaches. Immediate mortality is a wonderful focussing tool when used properly. You'll learn...
In the meantime, and within your own reflexive self-awareness, you are exactly whom you were a week ago. If a newly found label fosters empowerment, why argue? But if that same new-found label causes you to self-victimize, beware. There's no strength in that, now is there?
Brent
(Who has been through it all before)
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Hey Brent,
Right now I am not feeling all warm and fuzzy, but still wasn't my question.
(A title which I think says it all, cause there is a big rift between some of those with different diag. as "merely HIV+" and those with "AIDS")
HIV VS. AIDS?
Assuming the above definitions of AIDS people have brought up then do I have temporary AIDS? Or AIDS by default?
Clearly, if my counts rebound I will obviously use the HIV+ status cause that doesn't have all the derogatory and negative connotations.
I still feel this is a horribly complex and useless system to give this virus stages.
What do you think?
Wesley
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Wes-
I think that those with HIV, barring unforseen rampaging buses or earthquakes die of HIV, eventually.
Everything else is eventually, ultimately preparatory.
I have flatlined twice, live in chronic pain, have seen nearly everyone I've ever loved felled by the virus, but continue to wake up and live my life. That makes me a survivor. What are you?
Brent
(who needs to go to bed soon)
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Lord this thread is depressing. I need a drink. Or sex. Or something. ;D
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If the test of an AIDS diagnosis (among other things) is a drop in your tcell count below 200, then don't we all have AIDS? When I was initially diagnose, I was still seroconverting and my tcells were below 200. My doctor said that this was normal and that my tcells would rise as my immune system got the infection under control . However, with such a broad definition of AIDS, I suppose I have always had AIDS. My tcells have recently dropped below 200, and that was due to heavy viral replication. So was that another AIDS diagnosis (I know, seems silly to have AIDS twice)?
I don't think you can look at one lab test, (and completely ignore all other factors), and get hung up on an AIDS definition.
Cliff
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I find it interesting that everybody is trying to define this benchmark..... What does it matter??
In a sense, it doesn't (not considering what the financial implications might be with an AIDS diagnosis). I mainly wanted to point out that people can have low CD4's and be healthy or have a relatively decent count and have issues (like I did). I also find it strange that there's still so much confusion as to what having AIDS means. If I am truly considered to have AIDS (HIV+ and PCP), I'm just surprised that nobody told me. I really kind of meant it as a joke, like I missed out on knowing something.
David
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Do i have aids?
200 Cd4cells
16% cd4 %
26.3K< VL
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You have borderline AIDS.
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I really kind of meant it as a joke, like I missed out on knowing something.
oh. sorry i got serious.
it seems hiv is turning me into a cheddar wheel (i.e., dense)
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time for me to chime in again. . . well....I'll give one example as to why the AIDS status is important to me. In 1994 when I got my initial AIDS diagnosis (not my first + test), I sold my life insurance policy - which was called a viatical settlement. Some person, through a third party, bought the rights to be the beneficiary on the policy because my health looked pretty dire on paper. Since then, I have not 'recovered' but my T-cells have rebounded over 200 and have stayed between 200 -300 for the past 12+ years. The life insurance, to continue coverage at no premium cost to me, verifies my "illness" every year by asking my doctor to state my current condition. The AIDS diagnosis allows me and my "beneficiary" for the life insurance policy to retain the original contract of benefits. I don't want to imagine if suddenly because my T-cells are above 200 and some 'definition' pulled from somwhere insists that because I'm no longer a person with AIDS, but someone with just HIV, the life insurance no longer continues to insure at no cost. Premiums are waived based upon original medical diagnosis and "disability" that continues.
There has been lots of threads on websites suggesting that HIV alone does not cause AIDS. And, where I stand on the issue is that AIDS is exactly that - Acquired Immune Difficiency. I have an immune difficiency due to an acquired virus that is only having difficutly replicating because of the drugs I am taking. If I go off the drugs I most likely will die. That's a fact.
So, as far as I'm concerned, I have AIDS. The 'definition' provided by CDC for guidelines concerning disability claims or treatment, does not negate the fact that my immune system is compromised and that my life choices can not be that of a healthy individual.
On paper and in my medical file, my doctor writes the AIDS code 042 as a "diagnosis". I suppose there is no code for HIV Disease. And, I think that it's a lie to tell folks that I'm HIV positive, even if I don't have an OI. I do have lipoatrophy, which is not necessarily life threatening, certainly is a result of being long-term survivor taking pills. I've never even considered going back into the workforce, because I can just see the face of my employer when I request a certain amount of time for rest, and bathroom visits beyond 'normal' expectations. Oh, yes, and my demands to use the ADA laws to MY benefit ....
- david
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I still feel this is a horribly complex and useless system to give this virus stages.
What do you thinK?
I think it makes total sense.
HIV is not HIV is not HIV is not HIV.
WHO uses stages I-IV... which are useful markers to show how far along someone's HIV infection is and how much it's affecting his or her life.
I'm Stage I. Asymptomatic. Everything's, symptomatically, fine and dandy... my daily activities are completely unaffected, thus far, by my HIV infection.
To say that I'm equally as bad off as someone who's in the hospital with an OI (Stage IV) just because we're both HIV+ would be ludicrous and demeaning in the extreme.
Edited to add some stuff.
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The 1993 MMWR defines AIDS as being HIV positive and having a CD4 count less than 200, OR a CD4 percent less than 14, OR HIV positive and having an "AIDS defining illness", such as repetitive pneumonia, invasive cervical cancer, or pulmonary tuberculosis.
I think that's one of the reasons of the confusion. The CDC definitions of 1993 were issued well before HAART, so a bouncing back of T4 (including a potential column swapping) was much more unlikely then than it is today.
Besides, there are quite a few clinicians who consider it strange that, for example, a cervical cancer ist regarded as an OI, but an anal cancer isn't. An infection with Penicillium marneffei, which is very common in South East Asia, is not regarded as an OI because in 1993, South East Asia was just in the beginning of the pandemic. Apart from penicillosis, there are other OI's like aspergillosis, microsporidiosis, leishmaniosis or Morbus Hodgkin which, although quite frequent, are not considered as CDC OI. On the other hand, extremely rare OI's like histoplasmosis and isosporidiosis are part of the CDC catalogue.
That's why an update is necessary to reflect the changing face of AIDS since 1993. Even more so because there are a lot of countries where, like in the U. S., the AIDS definition is required to get treatment and meds. But it gets difficult for positive people in those countries if the definition is only based on what clinicians saw in the U. S. back in 1993. It's the global aspects of AIDS today which has to be taken into account.
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What I can offer is where we started, with hiv, arc and aids. Being only able to measure cd4's and cd8's, we estabished exposure to hiv, making someone hiv positive. Then, if certain things were true, moved the person into an 'arc' or aids related complex diagnosis. At the time, it was an opportunistic infection, especially pcp or ks (remember all the patients with ks?) which finally moved someone from being hiv positive or having arc to having, what was then deemed, full blown aids.
Now what about a cancer patient. If someone had cancer, undergoes chemo. and/or radiation, he or she may be called cancer 'free' or 'in remission.' But don't we usually think of this person as having had cancer, being a cancer patient in remission? Doesn't this person check in yearly to make sure that his or her cancer remains in remission? Not only do benefits kick in based on diagnosis, but once 'touched' always considered 'touched.' Win
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I think that those with HIV, barring unforseen rampaging buses or earthquakes die of HIV, eventually.
I've heard that I'm more likely do get killed by a bus than from something HIV related. This is particularly scary, as I have a bus and HIV!
[attachment deleted by admin]
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I thought the killer bus was in England? :o ::) :o ::)
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I'll say this...whenever my Uncle is getting horrible customer service somewhere, he starts telling them that he has AIDS and more times than not they do exactly as he asks!
M
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......................I have a bus and HIV!
Here's to David and his MCI!!! Gee David, I didn't know it was one of these... When you going to get it done?
Bus and HIV, what a concept!
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Good Day Everyone,
David you mentioned that you were in the hospital with PCP, Im a as everyone says a newbie, could you tell me what PCP is ?
Thanks
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Hi Fos,
PCP is a form of pneumonia that is commonly attracted to HIV+ people whose CD4's are very low, which makes us more susceptable to bugs.
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Hi Fos,
Since David isn't in the room, I will fill in for him.
PCP is Pneumosistis Carni Pneumonia. It is a type of PN that many people get but when you have a normal immune system it doesn't even give you a headache. However, many, if not most, people in the early days of this bug died of this disease. I have had it twice, along with many here. One of the very disturbing side effects of the disease, if you survive, is the very long recovery time of your brain. It seems that the high fevers of 104 and 105 for some of us; damage the brain in ways that have not yet been studied. This makes the recovery time very long, up to a year or two. I couldn't drive for three years after my last bout, and if you know anything about Timmie, taking his wheels away is equal to shooting him... I loooooooooooove cars. My Blog will help you understasnd some of the trauma of many of the OIs that I have dealt with. Sorry for the shameless promotion.
PCP really sucks and that is one of the reasons that many of the long termers here warn people to get on prophilactics when their CD4 drops below the 200 mark, where our bodies become exposed to all these diseases.
I hope this helps.
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Mi official diagnosis is: HIV infection. Stage: IA
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Here's to David and his MCI!!! Gee David, I didn't know it was one of these... When you going to get it done?
Bus and HIV, what a concept!
Yep, Tim, it's a big old MCI... a real bus... the kind that kills folks more often than HIV does, evidently! ;) I'm working on it pretty much all the time. It'll probably never get finished, but I hope to have it in a usable form in a couple of months. I swear since that little round with PCP almost three months ago I still don't have my stamina back, and it's taking me forever to get things done. You're right about it taking a LONG time to get completely over it. If I had to do it all over again, I'd have started meds when I got down in the 300's (CD4's) instead of just under 300 (when I got sick). Of course, some good things came out of the stay in the hospital, but it still wasn't fun, except for the O2; that was a great high!
David
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Damn, I didn't know you are only three months since PCP. Please don't push yourself, and don't obsess about the recovery. It will happen and with your drive and stamina, you will recover in time. Ask Robert, he also is still in recovery from two years ago.
My recovery projects were two boats and an Airstream. Seems hand work is good for the brain also.
Love Ya.
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Damn, I didn't know you are only three months since PCP. Please don't push yourself, and don't obsess about the recovery. It will happen and with your drive and stamina, you will recover in time. Ask Robert, he also is still in recovery from two years ago.
My recovery projects were two boats and an Airstream. Seems hand work is good for the brain also.
Love Ya.
You know, I was going to post about keeping busy. I think without my bus project, I wouldn't have been able to deal as well with this crap as I have been (coming up on the first anniversary of my 'Black Friday' soon. I think if folks keep as busy as they are able (understanding that some have issues that keep them from much activity), the mind is much happier and kept sharp. I know that, in the past (pre-HIV), if I didn't stay busy, I'd tend to get kinda lazy and dwell on crap going on in my life. Now I'm just too busy. Thanks for the supportive words about recovery.
David
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David/NC are you driving the bus to Atlanta for the Southern Gathering? ?? can you dissproportionatly expose to us the likleyhood of or..juxtapose the risk of being killed by that motorcycle behind you and the bus? or HIV? LOL
~jordon
ps: for whoever cares, I went "straight" from newly infected to AIDS in under 12 months. Excuse the pund "straight".
~jordon
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I think that the reason that the AIDS diagnosis is not fluid, is because once you get AIDS by that definition, you will most likely die without HAART. And once you start HAART you will need it to keep the virus at bay. It is a sad fact with this disease. I have been slowly climbing out of the casket, but I know that the lid can slam on me indefinitely. AIDS does not mean death for everyone. What it does mean is vigilance and lifestyle changes if we want to live.
rob
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I think that the reason that the AIDS diagnosis is not fluid, is because once you get AIDS by that definition, you will most likely die without HAART. And once you start HAART you will need it to keep the virus at bay. It is a sad fact with this disease. I have been slowly climbing out of the casket, but I know that the lid can slam on me indefinitely. AIDS does not mean death for everyone. What it does mean is vigilance and lifestyle changes if we want to live.
rob
Rob,
I think you hit the nail on the head. Once my uncle progressed to AIDS, he would have been dead without HAART. Now he needs it to stay healthy (which in his case is a relative term anyways). My sister was actually shocked at how he is on his own living in California. I said to her, Look, if he called tomorrow and said he was deathly ill, we would probably say something like "That Figures. It was just a matter of time". So the AIDS label, in his case, somehow fits.
Steve
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My name is philly267, and I have had AIDS.
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Use your gifts for good or evil as you see fit, but use them when the chance approaches. Immediate mortality is a wonderful focussing tool when used properly. You'll learn...
In the meantime, and within your own reflexive self-awareness, you are exactly whom you were a week ago. If a newly found label fosters empowerment, why argue? But if that same new-found label causes you to self-victimize, beware. There's no strength in that, now is there?
Brent, Brent, Brent.....I am SO GLAD you're back!
David, this thread made me reflect back to my own AIDS diagnosis...at the time, I remember feeling (strange as it may seem) relief. At that time, you didn't have AIDS until you had the O.I....mine was MAC of the liver. I remember being terrified, but strangely relieved....a memory I have managed to forget about for quite some time until today.
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I think that the reason that the AIDS diagnosis is not fluid, is because once you get AIDS by that definition, you will most likely die without HAART.
Naaah. The answer is much more mundane. Paperwork.
Every time one of us shifts from HIV+ to AIDS it's reported to the CDC as part of their data for their survellience reporting. Disability can be based on this. Funding can be based on this. Etc. Etc.
Now. Imagine if you will, if everytime someone went from AIDS to HIV back to AIDS, back to HIV it was reported. Everything based on the figures would have to change. Back and Forth. Back and Forth. That's about 900,000 people to keep track of.
That's a paperwork nightmare.
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Heres an Interesting short cut and dry explanation of the defintion maybe not gospel but easy to understand
http://www.thebody.com/Forums/AIDS/Labs/Current/Q182090.html (http://www.thebody.com/Forums/AIDS/Labs/Current/Q182090.html)
Now I understand some people may benefit from keeping the AIDS status and rightfully so.
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Here's an Interesting short cut and dry explanation of the defintion maybe not gospel but easy to understand
http://www.thebody.com/Forums/AIDS/Labs/Current/Q182090.html (http://www.thebody.com/Forums/AIDS/Labs/Current/Q182090.html)
Now I understand some people may benefit from keeping the AIDS status and rightfully so.
It makes sense to me, but from what I can tell, this isn't how the CDC looks at it. I still don't know if I have AIDS or not. Some list 'recurrung OI's'. I had PCP once and my t-cells never dropped below 200 and my % was never very low, so who the hell knows? I'll ask my Dr. next month when I have an appt. I'm sure he'll know what was reported to the Dept. of Health.
David