24.2 years to live?

[Razorbill]

I suppose I should be grateful for the time, but the news media reports of predicted life span for individuals in treatment has not sat well.  I dunno I was kinda hoping for more.  Aside from teachers retirement and soc sec, I used to put away money in an IRA.  In the years since my diagnosis, I have traveled widely and pretty much enjoyed my extra income in the moment, figuring I wouldn't be spending retirement money anyway.  Recently, I have been revisiting that decision and thought or restarting my contributions.  Now, I think not.  I'm not sure when I was first infected, prob around 1992.  So I'm 14 years into my 24.  Ten years from now I'll be 57, five years short of retirement age.  Sigh.  Look I know that it's an average - some live longer, some die earlier.  I think what settles poorly is the whole planning for retirement thing. I just don't have a sense of needing that money.  Anyway that's where I'm at.  At 47, I've outlived every other Razorbill on the planet.  I am grateful for what I've had and what I have now.

[Iggy]

.

[newt]

The figure is true for a group but cannot be extrapoloated to an individual. 

Also it is based on current optimum treatment and response, so really says nothing about the future should new and improved treatments come along, as they inevitably will.

- matt

Now playing: my throbbing thumb, cos I sliced it open on my penknife 10 mins ago (much blood)

[RapidRod]

newt, put a bandaid on it. 

[Life]

I've said this once on a thread, and Ill say it again.. "Anyone who puts a number to my name and the length of time I got left, I'm going to fuckem up...!"

[bocker3]

So, I believe this average is based on people who are adherent to meds as well as those that are NOT adherent, are not taking any, etc, etc.
Remember what "average" means -- some less and some more.  And, as Newt pointed out, it is the average for the population.  Think about how many people love past the "average" lifespan of 76 (or whatever it is nowadays).

Bottomline -- I had no idea when I was going to die BEFORE I got infected with HIV and I have no idea when I'm going to die now.  However, I am planning to live my life to fullest and not be concerned with numbers that aren't really connected to me.

Hugs,
Mike

[skeebo1969]

   I bet with my 2-3pk a day cigarette habit I can easily cut that 24.2 years in half!!   

[Oh501sguy]

I remember that in the late 80s ... they thought it was WOW if someone lived 5 years.  They only had very limited number of treatements.  AZT...

I was diagnosed as poz on 2/16/1993.   ( 2:35pm to be exact- why I remember that who knows).  I never did pay that damn doctor bill anyway!

So if I only have 24 years, this means Im into my second half.  Dear heart.  I am undetectable, rarely miss my meds and my vl is steady around 600-700.  Do not tell me I only have a few years left!  There are new treatment plans
coming down the pipeline all of the time.  If you work with your Doc and take care of yourself. Stay educated you can beat what the stupid statics say.  What they USED to call a death sentence, they are now calling a managable disease and you are more than likely die of something else!  FYI:  I happened to read this on POZ.  My advice, save some money but enjoy your life...and quit worrying about dying. 

[Miss Philicia]

I've been infected at least 15 years.  Every step of the way when I thought my expiration date was near it seems a new treatment appeared.  If I'd been infected a few years earlier surely my chances would have been less.  So yes, in terms of this 24.2 number that's just fuzzy math and for every year now that goes by that number will continue to increase.  In the 90's the figure was more like 10 years.

[DanielMark]

Numbers schmumbers.

No disrespect RB, but no one can predict when anyone will die, Poz or not. I was told when diagnosed 18 years ago to go home and prepare to die in six months tops, and yet I seem to still be here and doing okay so far.

Granted, I could just  be a figment of my own imagination trapped in a dream state. Life certainly seems that way some days.

"I am grateful for what I've had and what I have now."

And that will help you more than any pill or prognosis. Believe in it!

Daniel

[Cliff]

I don't think it would hurt to start thinking about saving for retirement.

[blondbeauty]

Average. That is the word. Some people will live a few months and others will leave for decades. Why should anyone die of HIV if meds manage to keep the undetectable and with a healthy immune system? Why should a tratment that is working stop working one morning?

[Eldon]

Numbers schmumbers.

No disrespect RB, but no one can predict when anyone will die, Poz or not. I was told when diagnosed 18 years ago to go home and prepare to die in six months tops, and yet I seem to still be here and doing okay so far.

Daniel is correct in this one...

Make the BEST of each Day!

[Razorbill]

Thanks for the feedback guys - I'm still murky on the extra retirement money thing.  But no matter, I'll deal.  I really appreciate some of the lighter comments.

Matt- stop playing with knives!

Eric - you can fuck me up any day!

Seekbo - with the drugs youre on cancer wouldnt dare invade your body.

Thanks also to the great folks who have survived so long and have a different perspective on this.  I learned alot.  Don't worry I'm not afraid of dying, or worrying about it.  Just planning certain things gets harder.

[skeebo1969]

   Weed keeps cancer out?   Dang I knew Bob Marley did not die of cancer....   With the number of people he slept with hmmmmmm.....  Yaddi's don't like condoms too hmmmmmm..  That dred died of AIDS!


   

[Jeffreyj]

I still expect to live forever, regardless of what any study says. And since '84, so far so good.

[Queen Tokelove]

I use to be concerned with the timeline when it came to AIDS but when your number is up, it's up. All it really means to me now is that my body can no longer fight and my maker has called me home. I'm not trying to be a downer for anyone but that is just how I feel. We were not meant to live forever and we will prolly live longer than the negs out there. All you can do now is enjoy the life you're living...and try to make the most of it.

[joemutt]

An advantage is that we realise maybe more than others that we're mortal;
I certainly need a few more years to get my sh*t together
but 24.2 years, hell, that's long.

[chemistry001]

Well i don't know about you lot but 24.2 years and I'll feel cheated, i intend to be here well past that.

As joemutt said i think we are more aware that we are mortal than most people would like to admit.

24.2 years, ha, I laugh in the face of that, the best parties I've been to have been New Years Eve parties and i to think that i (potentially) only have 22 left is ludicrous, just watch in 30 years + you'll see me strutting my stuff with the best of them on the dance floor welcoming in the New Year

Paul xXx (still a little high from clubbing last night)

[DanielMark]

Daniel is correct in this one...

I fully believe you can kill yourself if you believe you will for long enough, but I ain't dying on anyone's timetable except God's, thankyouverymuch.  They can stick their studies where the sun don't shine.

Daniel

[aztecan]

There is an old adage: There are lies, damn lies, and statistics.

I find myself in much the same dilemma as you, RB. However, in my case, its a little too late to "start saving a little." I will reach retirement age in a scant 12 years, unless I choose to stick it out until 65.

Fact is, I won't have enough in any kind of retirement account to support me, so working will be an inevitability. Also, I recently watched a very scary, yet informative, program on PBS regarding retirement.

Seems many of us baby boomers are in a spot. A combination of corporate chicanery and the public's gullability has left many of us without pension plans.. 401ks were never meant to be a sole source of retirement. but rather a supplement, but that's not how they are viewed today.

That said. I believe in setting a little aside just the same. My hopes are my home will be paid for in about 13 years, which should leave me with at least an affordable place to live.

But I don't want to put all my money on some future bet that may or may not become a reality. I see others "working for their retirement," at the expense of living today. I refuse to do that.

Now, if I only had 24 years to live with HIV, and if I was infected in 1980, as my first doc presumed, I died two years ago.

HUGS (From the great beyond . . . )

Mark

[Razorbill]

Mark - So glad to see your still with us.  xoxo

[ChaplinGuy]

As someone who was obsessed with determining my life expectancy when I learned my status this past June, I read this study with great interest. I have since become less concerned about the length of life, but focus on the quality thereof. And truly, 25 years seems like a long time! I know it will go by in a blink.

Agree with so many of the posts here that emphasize the "average" aspect of the study, and will throw in my opinion that both the media and the medical community love to promote "absolutes" as if they are discoveries. As the son of a pathologist and the brother of a doctor, I can tell you ... the medical community, wonderful though they can be, is extremely competitive and new studies are done to get a jump on someone else's "discovery" - let's not forget the b.s. that Dr. Gallo put people through in order to claim he discovered HIV!

All that said, I do have two questions that I can't figure out from reading this study:

1) Are they claiming 24 years average once you develop AIDS? (Again, could be the way I'm reading it as people often confuse AIDS with general HIV status)

2) If HIV/AIDS has only been known for 25 years, how can they determine that someone with HIV/AIDS and taking meds will live ... well, exactly as long as the virus has been known to the medical community? The drugs have only been on the market 10 years. This would lead me to believe that they are posturing an average based on those living with an AIDS diagnosis.

[J220]

Me? I'm infected with two things: hiv and optimism. I feel confident that in the next couple of years we are going to see exceptional treatment developments, whether it's VRX496, or PEHRG214, or the Tat Oyi vaccine.

[RobT]

What evidence r they referring to when those stats about the average life expectacy of an HIV+ individual. Everyone's body reacts differently to different kinds of medication.

RobT

Current meds: Truvada/Sustiva
VL: undetectable
CD4: 564

[Moffie65]

I think many of you know how I feel about this subject, and I want to point out just a few bits that most of you have overlooked.

First off, the retirement money is something that is totally up to each of you, as many of us have not been able to contribute, as we haven't had any income to speak of for so very long.  I feel strongly that paying for the house is a good goal, because then when you reach the magic age, you can then turn the home into a reverse morgatge and then turn the home into income.  The numbers on reverse morgtage are now quite astounding because of the high increase in value of real estate lately. 

On longevity;  Most of you have overlooked the main reason why many of the long term survivors are now checking out at about 25 years, and it has little to do with HIV.  It is mostly because of organ failure, due to the toxicity of the medications.  Few data have been collected in this very foggy area, as most deaths are now being recorded as merely "liver failure", "heart failure" or other things which when viewed for data are missing the real reasons.  There are a few data gurus that have mentioned this at the CDC, but not unlike the times of Gallo, there is little reason with this present administration in power, to deal with any truths, especially when connected with HIV.  Denial is far easier to exercise when looking at the needs of real people living real lives and still surviving HIV infection.  This is one of the reasons why HIV Activism is still very much needed in this modern age, to keep people focused on the facts. 

Just my view.

In Love,

[ChaplinGuy]

I just reviewed the Abstract of the actual study from Medical Care, but you have to be a member to get access to the full study online.

Reading this, it seems to suggest life expectancy once you initial HAART and that it's dependent on your CD4 count when you begin:

The Lifetime Cost of Current Human Immunodeficiency Virus Care in the United States.

Original Article
Medical Care. 44(11):990-997, November 2006.
Schackman, Bruce R. PhD *; Gebo, Kelly A. MD, MPH +; Walensky, Rochelle P. MD, MPH ++[//]; Losina, Elena PhD ; Muccio, Tammy BA ++; Sax, Paul E. MD [//]; Weinstein, Milton C. PhD [P]; Seage, George R. III ScD, MPH [P]; Moore, Richard D. MD, MHS +; Freedberg, Kenneth A. MD, MSc ++[P]

Abstract:
Objective: We sought to project the lifetime cost of medical care for human immunodefiency virus (HIV)-infected adults using current antiretroviral therapy (ART) standards.

Methods: Medical visits and hospitalizations for any reason were from the HIV Research Network, a consortium of high-volume HIV primary care sites. HIV treatment drug regimen efficacies were from clinical guidelines and published sources; data on other drugs used were not available. In a computer simulation model, we projected HIV medical care costs in 2004 U.S. dollars.

Results: From the time of entering HIV care, per person projected life expectancy is 24.2 years, discounted lifetime cost is $385,200, and undiscounted cost is $618,900 for adults who initiate ART with CD4 cell count <350/[mu]L. Seventy-three percent of the cost is antiretroviral medications, 13% inpatient care, 9% outpatient care, and 5% other HIV-related medications and laboratory costs. For patients who initiate ART with CD4 cell count <200/[mu]L, projected life expectancy is 22.5 years, discounted lifetime cost is $354,100 and undiscounted cost is $567,000. Results are sensitive to drug manufacturers' discounts, ART efficacy, and use of enfuvirtide for salvage. If costs are discounted to the time of infection, the discounted lifetime cost is $303,100.

Conclusions: Effective ART regimens have substantially improved survival and have increased the lifetime cost of HIV-related medical care in the U.S.

[libvet]

Yeah.  When I read that article, I was a little disturbed as well.

But it was what I DIDN'T read in the article that gave me hope.

When talking about "average", we are talking about a relative term.  If we look at a child who dies of SIDS before a year old and a man who lives to be a hundred, then the "average" is 50 years.

It doesn't really say much about the other factors involved that would also result in a shortened lifespan.

Look at how many people are infected with HIV and HepC which is very common.   

Look at how many people don't get diagnosed until they are already VERY ill.

Look at how many people don't respond well to antivirals.

Look at how many people aren't adherent to their meds.

Look at the number of people already infected with resistant genotypes of HIV.

There are so many factors that are not directly addressed in the article that are common in the population that has HIV that would lead to an earlier demise, one can't make any assumptions about one's own situation based on it.

The one thing it doesn't directly address that is probably what we NEED to hear and probably is no empirical data for is the average life expectancy of a person who is on successful antiviral therapy and whose numbers remain stable.

Hell, I've been undetectable for almost 7 years now on my first regimen and I plan to live long enough to retire and sit around with my husband (at least I hope we can get married at some point) until well into my 70's and 80's.

But I may get hit by a bus tomorrow.   

So, I'll stay optimistic on this one since it really doesn't address my specific situation.

Michael

[aztecan]

Hey Tim,

You make a valid point. How long can the body sustain itself under the onslaught of the chemical substances we are pumping into it daily?

We know some of the longer-term side effects of some of the older meds such as AZT, Crixivan, Zerit, etc. Others haven't been around long enough for anyone to know what will happen.

Sustiva, the new standard of care, has only been around for what, six years, or is it seven? What will happen after 10 years, 15 or 20?

I agree that more focus needs to be placed on the longer-term effects of these drugs - of all the drugs.

That said, I still stand by my believe of setting a little money aside, paying for the house and living each day as fully as I can.

I can't count on another 12 or 15 years of good health. Nobody can, pos or neg. So, focusing solely on the future and forgetting today would be shortchanging myself.

Anyway, that's my 2¢ worth.

HUGS,

Mark

[blondbeauty]

I think viral load can be kept undetectable indefinitely with today's meds. So the major concern are the toxicities of these meds. But what is worse...   the mercury added to cigarettes and the smoking paper...the additives of the food...the ftalates of perfumes absorbed through skin...We should think seriously about all these thing to which we are exposed in our daily life. Maybe giving up smoking can compensate the toxicities of HIV meds.

[wishihadacat]

I wouldn't worry about it. I've been living with hiv, knowingly or not, for between 26 and 27 years. Although I never suffered from an O.I. (as the term is defined) I have lived through every medical "advancement" in the treatment of hiv, and survived all of them. We all know that there are many factors that determine mortality in any population, are we are no different. Eat reasonably healthy food, keep your mind and your body reasonably active, and have as much great sex as often as humanly possible with men/women/other whom you actually like.

Seriously, if you have been on HAART for awhile, and particularly if you have Hep C or a history of alcohol abuse or ANY reason to wonder about your liver, you should have a biopsy done even if your bloodwork is always spectacular. as there can be unexpressed fibrosis. Apart from that, and whatever other diagnostic procedures are appropriate, you should plan your life as anyone else might.  I could throw in a dozen or so other helpful aphorisms here, but you get the picture.

[randym431]

Let me do the math.
I'm 53. Found out a year ago at 52.
Started meds at 52.
I think the national average life for a male is like 72 (or 75?).
72 - 53 = 19 more years for a male.
Hiv+ I get 24 years. A gain of 5 years for being hiv+.

I'll go for door #1 Bob, the one giving me 24 more years as to 19 years.