22 years now with full blown AIDS

[wolfter]

This is quite a broad question.  From a legal standpoint? a medical viewpoint?  A tracking and reporting aspect?  A lot of the "standards" come (IIRC) from the CDC when it was necessary to track new infections and keep track of how many were getting sick, already sick or already dead.  Those standards were set in place at a time that when you got AIDS there wasn't much of a chance of having UNAIDS. 

I'll always be classified as living with AIDS...so what?  From a personal viewpoint, I'm person who is living with HIV and don't plan on dying anytime soon.

Perhaps being more specific can help us address it.

wolfie

[leatherman]

My doc had me on bactrim for over 15 years and didn't let up till I my cd4 was 300 and thats why the number sticks in my head ... he was a cautious type . Thanks .

I stayed on bactrim for 12 yrs until I consistently stayed over 275. LOL My doc kept trying to take me off after i remained at 225; but I kept reminding him of my 3 bouts of PCP that were happening every other year. When the choice was bactrim or PCP... well, there's really not much of a choice there. LOL

Perhaps being more specific can help us address it.

Are we beinging Punk'd?

hmmm, we've actually had this conversation, this exact same conversation, with mozartian once before.

22 years now with full blown AIDS

[Jeff G]

Thanks for the catch Leatherman ... I merged this thread for context . It does seem like a discussion on semantics to the OP . Mystery solved . 

[wolfter]

Is the term "full blown AIDS" even part of the modern day vernacular?  I think it was common back when to indicate that a person was wracked with many OI's and the prognosis didn't look promising.

[mozartian]

It matters to me because I want to refer to my condition of having the AIDS virus with the proper terminology. If all of us with the virus have our own definitions then it becomes almost impossible to communicate because when one person says "I do not have AIDS"  he may have a definition that is completely the opposite as the next person who says "I do not have AIDS". 

The definitions are in place by the CDC and the government to keep all the people who have the virus from getting disability.  Only the ones that are called "AIDS" can now get disability.  These were highly controversial definitions that were argued about in the late 1980s when there were a lot of people trying to keep all the people who were gay from getting disability.  If they are ever changed I can see just by the response I have gotten here that this will be a very hot topic and especially for the people that are not now classified as having AIDS.  These people want to maintain their right to say "I do not have AIDS", even though they have the virus.   

[leatherman]

I think it was common back when to indicate that a person was wracked with many OI's and the prognosis didn't look promising.

sadly that still happens today.

An estimated 15,529 people with an AIDS diagnosis died in 2010 (http://www.cdc.gov/hiv/statistics/basics/ataglance.html)

[Jeff G]

A low CD4 count is not enough to insure a disability finding if a person applies ... there are other medical criteria that must be met . I do not think the definition of the word Aids is a factor in the way you are suggesting .

[wolfter]

Mo, I believe you're the only person making this a "hot" topic.  You've still not revealed exactly what issue you're having in relation to the terms.  From a practical standpoint, I refer to myself as and UD positive person, not a person previously living with AIDS.  I will always be counted as one of the AIDS statistics, but it has no everyday relevance.

[mozartian]

Is everyone out there who is called AIDS on disability?
Is there anyone out there who is called HIV Positive on disability?

[Jeff G]

Is everyone out there who is called AIDS on disability?
Is there anyone out there who is called HIV Positive on disability?

Yes to both questions . < I should have read more carefully . I meant to say that there are people who fit both definitions who are on disability .

I had Aids and am now living with HIV and I am on disability .

[Almost2late]

I have AIDS and I'm not on disability

[Miss Philicia]

Is everyone out there who is called AIDS on disability?
Is there anyone out there who is called HIV Positive on disability?

CD4 count is irrelevant to SSDI criteria. It's based on a long list of qualifying medical situations associated with HIV with an emphasis on impaction of "functional capacity".

http://www.ssdrc.com/hiv2.html

Also, mental health treatment (documented) can be factored into a decision to grant benefits.

[wolfter]

Is this concerning benefits?  Why refuse to to simply state concisely what you're truly inquiring about?

Beyond that, I have nothing further to add.  Not in the mood to solve riddles this morning.

[Almost2late]

Thanks for the link ms.P, Hey I got somthing new outta this thread.. I could quit my job and go on disability 

[mozartian]

My viral load is zero.  They cannot see the virus anymore.  I got cured. 

[Jeff G]

My viral load is zero.  They cannot see the virus anymore.  I got cured. 

You can write a book called The Man Who Wanted Aids . I only have Aids when friends call and want help moving .

[Joe K]

Is everyone out there who is called AIDS on disability?
Is there anyone out there who is called HIV Positive on disability?

Nobody is called AIDS or HIV positive, as we each have actual names.  You either HAVE AIDS or you ARE HIV positive, or both.

There is also no such thing as the AIDS virus.  It is called HIV that can progress to AIDS.

Semantic gymnastics and a total waste of time.

Joe

[leatherman]

The definitions are in place by the CDC and the government to keep all the people who have the virus from getting disability.  Only the ones that are called "AIDS" can now get disability.  These were highly controversial definitions that were argued about in the late 1980s when there were a lot of people trying to keep all the people who were gay from getting disability.   

paranoid much?

My viral load is zero.  They cannot see the virus anymore.  I got cured. 

I too really don't understand your issue.
HIV positive = positive reaction for HIV antibodies and/or having a detectable viral load
AIDS = a condition brought on by HIV infection, defined by high VL, low CD4s and OIs

your "true" viral load is NOT zero. Each of us who are HIV infected, UD or not UD, have reservoirs of HIV which reside in lymph nodes, the brain, etc.

there is no cure for HIV. once you are dx'ed HIV positive and/or with AIDS, you will always be HIV positive regardless of your UD or non-UD viral load. (Actually once a cure is found, some definitions may have to change as those who are HIV+ will always test poz for HIV antibodies, so that criteria will need to be changed; but that is a long way in the future) Once you are diagnosed with AIDS, for medical and financial reasons, you will always be listed as having AIDS. This dx will not only assist with access to healthcare and financial assistance; but will make sure that subsequent doctors take into account that your system was at one point that damaged.

[leatherman]

I could quit my job and go on disability

that is much, much less likely these days. Modern medicines are able to quickly restore someone back to good health these days - even those who have been dx'ed with AIDS. a disability evaluation is based a person's health (mental and/or physical) being severely negatively impacted for a long time.

[mecch]

mozartian - what's your point? Do you need to discuss something? Cut the cryptic comments and spell it out, clearly. We don't understand what you want to discuss. 

[mozartian]

My Tcell count is 415, my vl is undetectable.  I once had a T cell count of 32.  Do I have AIDS?  If not, then what is it called?  That is what I want to know. 

[Miss Philicia]

My Tcell count is 415, my vl is undetectable.  I once had a T cell count of 32.  Do I have AIDS?  If not, then what is it called?  That is what I want to know. 

If you live in the US, for data collecting statistics you are living with AIDS. I think when one reads a CDC annual report for a state, metropolitan area or county they group them in AIDS category and HIV category.

But clinically speaking a doctor would list you in a prognosis report as "HIV, symptomatic/AIDS" (that is what mine says -- I was diagnosed 21 years ago with <200 cd4 but currently have +1000).

I still don't understand why you're having such a difficult time grasping this, or even what purpose it serves you at the end of the day.

[leatherman]

My Tcell count is 415, my vl is undetectable.  I once had a T cell count of 32.  Do I have AIDS?  If not, then what is it called?  That is what I want to know.

Join the club! 
You had AIDS; you are HIV positive.

this is not rocket science. though medically you are listed as having had AIDS, feel free to call yourself HIV positive. did you even read my post??

HIV positive = positive reaction for HIV antibodies and/or having a detectable viral load
AIDS = a condition brought on by HIV infection, defined by high VL, low CD4s and OIs

there is no cure for HIV. once you are dx'ed HIV positive and/or with AIDS, you will always be HIV positive regardless of your UD or non-UD viral load.... Once you are diagnosed with AIDS, for medical and financial reasons, you will always be listed as having AIDS. This dx will not only assist with access to healthcare and financial assistance; but will make sure that subsequent doctors take into account that your system was at one point that damaged.

[mozartian]

You said once you are listed as having AIDS, you will always be listed as having AIDS.  So on one person's list I have AIDS and on another person's list I am HIV Positive. 

[Tonny2]

I am wondering the same thing thing as Miss P and would like to know the motivation for the question because it matters .

If the definition is 200 then I have had aids a dozen times with my numbers back and forth from lab to lab . Im not finding fault with asking an honest question just trying to understand . I have said it before ... Aids, hope I never get that again .

if you cd4 goes below 200, would you still get meds to prevent OI? wouldn't that be called AIDS?...I don't know...and I'm like you Jeff, I don't want to have AIDS again

[Joe K]

You said once you are listed as having AIDS, you will always be listed as having AIDS.  So on one person's list I have AIDS and on another person's list I am HIV Positive.

Your name is not on any list, AIDS or not.  The diagnosis is used for statistical purposes, not to track actual people by name.

Joe

[mozartian]

to quote leatherman, the phrase was

"You will always be listed as having AIDS." 

[Jeff G]

to quote leatherman, the phrase was

"You will always be listed as having AIDS." 

Tell us again why its personally important to you that it only be called Aids ? What do you hope to be accomplished or solved for it to only be called Aids ? . I really am trying to understand .

[mozartian]

mozartian has been totally misunderstood

[Tonny2]

ojo    thanks guys...I did learn  something new today . Its  like if I were to look for benefits today, my AIDS dx would help my case?....ojo

[wolfter]

mozartian has been totally misunderstood

No doubt!!!  No one has any idea what the hell you're trying to express

[leatherman]

You said once you are listed as having AIDS, you will always be listed as having AIDS.  So on one person's list I have AIDS and on another person's list I am HIV Positive.

whose lists are you talking/worrying about?

Are you worried about how your doctor "lists" you? your medical records - your private HIPPA medical records - will always say that you had AIDS. What's the big deal? Don't you want your treating physicians to treat you properly? Your medical records should also have data about when you were 12 too.

Are you worried about state or federal government lists? while someone is actually dealing with an AIDS condition, they are listed, by state government tracking, as just another number of the people living with AIDS and as another number to the list of people living with HIV. (because you are both at that point) When you get past the AIDS stage, the state subtracts one from their "aids" number. (btw these numbers, PLWA and PLWH, are incredibly important. These numbers help determine federal money given to the states for prevention and treatment.)

ojo    thanks guys...I did learn  something new today . Its  like if I were to look for benefits today, my AIDS dx would help my case?....ojo

Nope. Maybe back when you had been sicker; but seven yrs later, nope. having aids a long time ago won't help you get disability today.

it's been seven years and change and still VL UD and cd4 498

[mitch777]

ojo    thanks guys...I did learn  something new today . Its  like if I were to look for benefits today, my AIDS dx would help my case?....ojo

I wish I had better news but I'm jumping through hoops with getting on disability myself because my numbers are good. It takes so much more these days. I will be 32 years Poz in October. I enjoyed working when I was able.

[drewm]

I am confused as hell. What do I have? 

[Jeff G]

I am confused as hell. What do I have? 

If I am remembering it right you got the bath house aids .

[drewm]

If I am remembering it right you got the bath house aids .

Good call Jeff 

[Tonny2]

I wish I had better news but I'm jumping through hoops with getting on disability myself because my numbers are good. It takes so much more these days. I will be 32 years Poz in October. I enjoyed working when I was able.

ojo    Hi mitch...I feel bad now for all of those who are looking for disability benefits, if an AIDS dx isn't enough to get help....I will be 20 years  poz in November, I had to retired from work in 2000 because I'm legally blind due to CMV, I worked until I couldn't get my driver's license renewed, I miss work, specially my good checks, now I get social security and my pention from work....I remember durong the years 97 t0 2000, my last rear working, I would go to work with awful pain from neuropathy, but I had to work, because I loved what I was doing, anyway...I guess now the new meds are no toxics like the ones we older dx went through....thx mitch this thread is interesting, tho eventhough my cd4 is 498 I still consider my self with AIDS, cause my body is so beaten up, I lost a friend of only 30 years old to Lymphoma having 320 cd4 and there is a person in here, that I would ;ike to call friend who has made it through the same lymphoma (wich I'm pretty happy for him)that killed my friend in March...thanks guys     ojo

[mecch]

mozartian - People have tried to be helpful and they have been generous with their time. However you don't offer any clarification nor respond to any questions.
My opinion, is you seem rude.  Maybe that's not true, and you are clueless how communication works.
in this thread, it appears to me you are trolling the forum, sucking energy but retuning little.

[Joe K]

mozartian has been totally misunderstood

If you have been misunderstood, why don't you tell us what you really want from us?  We are trying to help, but you haven't given us much to understand.

Joe

[wolfter]

If I am remembering it right you got the bath house aids .

You don't contract AIDS, just the virus that can lead to it.     So technically, Drew got the bath house HIV.  lol

I got mine the old fashion hillbilly way.  I has me the vintage 80's AIDS version.  Or do I now just have HIV?  I'm so confused.

[RapidRod]

Your name is not on any list, AIDS or not.  The diagnosis is used for statistical purposes, not to track actual people by name.

Joe

Have to disagree with you, I am listed with the Ohio Department of Health as having AIDS.

[leatherman]

Have to disagree with you, I am listed with the Ohio Department of Health as having AIDS.

Yeppers! You are right Rapid. I knew that because I lived in OH when dx'ed. I also knew I was on "the list" in SC because of the interview with the health dpt when I moved here. However, I did some research and learned some more about these lists. ALL of us in America who are HIV positive are on a state list now, listed by name; however the CDC/federal gov't only has statistical data without names.

Beginning in 1985, many states implemented HIV case reporting as part of an integrated HIV and AIDS surveillance system. As of 2008, all states had implemented confidential, name-based HIV infection reporting. Beginning in 2013, CDC began referring to AIDS as HIV infection, stage 3 (AIDS) in all HIV surveillance products.

http://www.cdc.gov/hiv/statistics/recommendations/publications.html

NAMES-BASED REPORTING
Since the beginning of the epidemic, AIDS cases have been reported to state health departments using name-based reporting. This is now also true for HIV cases. This means, if you test positive for HIV or another STD, the test result and your name will be reported to the state and local health department for the purposes of public health surveillance. Only public health personnel have access to this information at the state level and use this information to get better estimates of the rates of HIV in the state. The state health department will then remove all personal information about you (name, address, etc.) and share the remaining non-identifying information with the CDC so they can best track national public health trends. The CDC does not share this information with anyone else, including insurance companies.

http://www.aids.gov/hiv-aids-basics/prevention/hiv-testing/confidential-anonymous-testing/


dang!  All I did was complicate things with this post. (and probably freaked out the people afraid to be on "the list". I'm looking at you mozartian LOL) AIDS isn't AIDS anymore. It's now called "HIV infection, stage 3"

[J.R.E.]

Have to disagree with you, I am listed with the Ohio Department of Health as having AIDS.

Same here,.... When I renewed my 6 month authorization for Ryan White, here in Florida, two weeks ago there were two boxes.  One was " HIV positive"  The other "AIDS".  The "AIDS" box was checked.  This is the info that goes to the Florida dept of Health.


Ray

[RapidRod]

Yeppers! You are right Rapid. I knew that because I lived in OH when dx'ed. I also knew I was on "the list" in SC because of the interview with the health dpt when I moved here. However, I did some research and learned some more about these lists. ALL of us in America who are HIV positive are on a state list now, listed by name; however the CDC/federal gov't only has statistical data without names.
http://www.cdc.gov/hiv/statistics/recommendations/publications.html
http://www.aids.gov/hiv-aids-basics/prevention/hiv-testing/confidential-anonymous-testing/


dang!  All I did was complicate things with this post. (and probably freaked out the people afraid to be on "the list". I'm looking at you mozartian LOL) AIDS isn't AIDS anymore. It's now called "HIV infection, stage 3"

After 30 plus years I don't even care. It is what It is. I'm alive, heath is pretty good and have out lived a number of my friends that wasn't positive, so I'm very thankful for that.

[wolfter]

After 30 plus years I don't even care. It is what It is. I'm alive, heath is pretty good and have out lived a number of my friends that wasn't positive, so I'm very thankful for that.

EXACTLY!!!!

[RobbyR]

What is considered the "cutoff" between having full blown aids and being hiv positiven and how did this number come to be? I've never understood clinically how some arbitary cd4 count number could mark a borderline between having full blown aids and being hiv positive.

When I first began treatment my cd4 had been consistently in the upper 200s for a year or so, and my viral load on my very first lavs was about 48,000. I forget the exact numbers, but I know I didn't have full blown aids. I was poz for several years before I sought treatment though, so maybe technically I was at some earlier point, but I'll never know, and other than my bad seroconversion experience, I never had any major health problems.

After a few months on meds my cd4 went up into the 600s  where it remains today, and I've been undetectable ssince 2010. I could have not started meds when I did, my doctor left the decision to me, but I wanted to do it to see how I'd feel. It's such an individual personal decision for ach person. I have a friend whos never been on meds he has a very high viral load like around 100,000 but he feels great.

Which is the number doctors look at the most? Is it viral load cd4 or cd%? My doc told me once that cd% was more telling, but my primary doc always asks me what my cd4 count is on my 6 month checkups. Just wondering what is the most clinically important number in regards to counts.

[mecch]

What is considered the "cutoff" between having full blown aids and being hiv positiven and how did this number come to be? I've never understood clinically how some arbitary cd4 count number could mark a borderline between having full blown aids and being hiv positive.

When I first began treatment my cd4 had been consistently in the upper 200s for a year or so, and my viral load on my very first lavs was about 48,000. I forget the exact numbers, but I know I didn't have full blown aids. I was poz for several years before I sought treatment though, so maybe technically I was at some earlier point, but I'll never know, and other than my bad seroconversion experience, I never had any major health problems.

After a few months on meds my cd4 went up into the 600s  where it remains today, and I've been undetectable ssince 2010. I could have not started meds when I did, my doctor left the decision to me, but I wanted to do it to see how I'd feel. It's such an individual personal decision for ach person. I have a friend whos never been on meds he has a very high viral load like around 100,000 but he feels great.

Which is the number doctors look at the most? Is it viral load cd4 or cd%? My doc told me once that cd% was more telling, but my primary doc always asks me what my cd4 count is on my 6 month checkups. Just wondering what is the most clinically important number in regards to counts.

"full-blown aids" - certainly not a diagnosis now and wonder if it ever was one. I wonder if docs used that term.

Robby people were diagnosed with "AIDS" based on CD4 count AND opportunistic infections.

[RobbyR]

Thanks for the clarification. I used the term full blown aids, but actually when you think of it, it seems to be a rather archaic term more suitable for the 80s or 90s than today. It's probably more of a cultural term than a medical one for sure. It definitely has a negative connotation and I've never been comfortable using it. I don't hear many use it, certainly none of my dcotors ever have that'd I've heard.

No doubt the term "aids" was thrown around a lot more in the old days to not only stir up fear mongering, and ostracizing, but also because at that time the virus just wasn't understood.

There's still a distinction of course, but I'm glad more people are aware that hiv and aids are NOT the same. And really, it's nobodys business except the patient and their doctors! Like I said I have a friend who technically has aids but he's healthy as can be and is a great guy. That's his life and I respect it.

[Since1993]

AIDS is still a diagnosis used by clincians.  It is a also listing used by the Social Security Administration to determine disability.  If you are taking Bactrim, you have AIDS.

For disability determination purposes, the Social Security uses a more stringent eligibility process than what your state's Medicaid program or your healthcare provider uses. 

The Social Security Administration is updating their most recent listing for HIV/AIDS for 2014:

http://www.gpo.gov/fdsys/pkg/FR-2014-02-26/html/2014-04124.htm

[mecch]

No doubt the term "aids" was thrown around a lot more in the old days to not only stir up fear mongering, and ostracizing, but also because at that time the virus just wasn't understood.

There's still a distinction of course, but I'm glad more people are aware that hiv and aids are NOT the same. And really, it's nobodys business except the patient and their doctors! Like I said I have a friend who technically has aids but he's healthy as can be and is a great guy. That's his life and I respect it.

AIDS was and remains a real diagnosis, Robby.  AIDS was never "thrown around" by doctors as a term to do any such thing, as you suggest, in the old days.  People got sick with HIV to a point where they had an AIDS diagnosis.  Doctors aren't in the business of fear mongering and ostracising.

If you are talking about the public and the media, however, have at it.

One point of the thread is to help people understand the difference between why doctors and epidemiologists and health officials call things, back then, and now.  And how that differs from what the public might say, or believe.

So yeah I like your second paragraph, above.