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Author Topic: Life expectancy cliché question  (Read 5645 times)

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Offline azprince

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Life expectancy cliché question
« on: May 14, 2009, 07:39:35 AM »
I know many people ask this question: how long will I live, and many get the answer : unless a car hit you tomorrow you should live long....but I read a study saying that its expected for HIV+ 20 years to live another 35 years as an average, do you think this number could increase within the coming years, logically, what should I expect, can all of us see the day that an old 80 year old man is HIV+....can you give me some recent studies in that regard...please
I have to admit : the good thing is that from now on;  I have no option but to succeed , still its ok to worry :))

Offline Basquo

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Re: Life expectancy cliché question
« Reply #1 on: May 14, 2009, 09:03:29 AM »
I don't think you need to see a study to see the day that there's an 80 year old poz person.  Just wait around, you'll probably meet one.  Larry Kramer is 74 already.

Offline blondbeauty

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Re: Life expectancy cliché question
« Reply #2 on: May 14, 2009, 09:36:05 AM »
I have a new 75 year old friend (a retired cardiologist) that has been HIV + since de 80,s. He has just had a face lift done, looks great and travels all around the world.
Instead of worring about how old will you get I would worry about having a full life for as long as I live. It is not very nice to be 90 y/o in a hospital bed but alive...
I have seriously thougt about suicide if my life becomes a constant and non reversible suffering.
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline Assurbanipal

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Re: Life expectancy cliché question
« Reply #3 on: May 14, 2009, 09:50:15 AM »
I know many people ask this question: how long will I live, and many get the answer : unless a car hit you tomorrow you should live long....but I read a study saying that its expected for HIV+ 20 years to live another 35 years as an average, do you think this number could increase within the coming years, logically, what should I expect, can all of us see the day that an old 80 year old man is HIV+....can you give me some recent studies in that regard...please

Hi

One of the best recent studies is this one.  http://jama.ama-assn.org/cgi/content/full/300/1/51

It was discussed at length in this thread: http://forums.poz.com/index.php?topic=21859.0

Another set of highly credible studies comes out of the ART cohort collaboration.  They list publications here http://www.art-cohort-collaboration.org/  

A few other points you may want to keep in mind:

- the title of this thread asks about life expectancy, but in your post you ask "...can all of us see the day that an old 80 year old man is HIV+?"  Life expectancy is not a very good tool to use to answer that particular question.  That's because life expectancy is an arithmetic average of the age of death -- even if most people are expected to live into their 80's and 90's a few deaths of people in their 20's and 30's can bring the average way down.  So even if the listed life expectancy is 69, there are a lot of people living into their 80's embedded in that number.  In fact, because people who die young bring down the average a lot more than those who live longer than average bring it up, most people in Western countries live longer their life expectancy.
 
- You hit it right on the head when you said "I read a study saying that its expected for HIV+ 20 years to live another 35 years as an average, do you think this number could increase within the coming years,"  Studies based on actual data don't usually predict what will happen with more research and even better medicines to come.  It is likely that additional research and development will provide even better medicine for someone your age, and even better life chances.

- Finally, if you are good about seeing the doctor, as a newly diagnosed individual your chance of dying is tiny (far less than one in a hundred) over the next 10 years.  And with all the changes we are seeing in the science of healthcare, the next 10 years will revolutionize the practice of medicine.

So stay well
Assurbaninpal
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline Miss Philicia

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Re: Life expectancy cliché question
« Reply #4 on: May 14, 2009, 11:34:05 AM »
I have problems with any studies of these types.  For example, there was recent press about the high percentage of HIV-infected patients in the US that even with care available are not getting regular treatment.  I was rather surprised at that rate, but then really I shouldn't be. 

But if I could fake a chart on the back of a used cocktail napkin it would be more of less something like this:  after the introduction of HAART death rates instantly plummeted and then fairly stabilized, cut by something like 80%.  But, of course, to the newly infected there's that OMGPEOPLEARESTILLDYING meme.  What I would add on the napkin is just from personal experience recently -- who dies.  It goes like this -- there are a subgroup of pre-HAART patients with complicated resistance issues that either don't respond to treatment post-HAART, or have trouble maintaining viral suppression.  So there's a drip drip in that group.  Then there's a group of denialists.  Then there's a group of what I call "denislist-lite" -- they don't deny HIV, but they're in denial and don't obtain regular treatment, take medication and what not.  Then there's a group with pre-diagnosis mental issues that only worsen when faced with a chronic disease and that interferes with regular treatment, medication schedules etc.  Then there's the poverty cases, homeless, alcoholics and hard core drug users/addicts -- go to any public HIV clinic and sit in the waiting room for 3 hours and you'll get the picture.  Lots of resistance issues build up in those groups, etc.  Also factor in newly diagnosed individuals that didn't learn of infection until they had 1 t-cell left.

So basically if you caught your infection before the bottom dropped out numerically, and this happened after 1996, and you're not spending every day in a heroin shooting gallery or at a crack house, and go to the doctor regularly, adhere to a proper medication schedule you're pretty good to go.  Every few years treatment advances, so that increases life expectancy.  I see little reason for a person infected today at the age of 18 not to live to be 80, unless they decide to walk in front of a bus and commit suicide because they're inventing needless worry about having HIV.  Sure, it kind of sucks to throw back pills daily but some of you get to take a mere one pill a day and still manage to complain.  Try taking 25 like I do and let me know what you have to whine about.
"I’ve slept with enough men to know that I’m not gay"

Offline Funkengruven

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Re: Life expectancy cliché question
« Reply #5 on: May 14, 2009, 11:52:47 AM »
Well said Miss P

Offline BT65

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Re: Life expectancy cliché question
« Reply #6 on: May 14, 2009, 02:38:00 PM »
some of you get to take a mere one pill a day and still manage to complain.  Try taking 25 like I do and let me know what you have to whine about.

Preach, sister!
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline elf

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Re: Life expectancy cliché question
« Reply #7 on: May 15, 2009, 02:35:46 AM »
Quote
The remaining life expectancy for a 20-year-old HIV patient on cART increased from 36.1 years in 1996-1999 to 49.4 years in 2003-2005, Robert Hogg, Ph.D., of the British Columbia Center for Excellence in HIV/AIDS here, and colleagues reported in the July 26 issue of The Lancet.

In contrast, a healthy 20-year-old could expect to live about another 60 years.
http://www.medpagetoday.com/HIVAIDS/HIVAIDS/10250
Let's have a Kiki!

Offline aztecan

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Re: Life expectancy cliché question
« Reply #8 on: May 15, 2009, 03:17:23 AM »
What our Philicia said.

Even though I am pre-HAART, I still hope to live to see 80 - and I am just damn well stubborn enough to do it too!

So, get out of the way, younguns, Daddy is coming through.

HUGS,

Mother Mark


"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline azprince

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Re: Life expectancy cliché question
« Reply #9 on: June 02, 2009, 10:13:44 PM »
Preach, sister!
The obedient , and , The victims !!

Joining many HIV+ forums has been such an interesting issue for me....although painful since I know that the consequences are reflected on me in addition to the many others who will suffer eventually from the attitude of some HIV+ people who by their posts or replies prove that if we can add another reason to the  painful fact to why there are very big problems when it comes to the system that deals with the pandemic of HIV in USA...let me explain:
when I was first diagnosed , although I have never practiced sex without a condom! I started questioning it and asking about How and why...well I was shocked to get such angry responses from HIV+ people excusing me of lying and being hysterical...why...because I dared to question some facts that were given to me falsely , such as " as long as I use a condom I am safe! Well guess what I never had sex without a condom , yet I got it !
Then came the time that I questioned the Meds side effects, and although some guys were great enough to comfort me, some were acting as the obedient slaves of the Master " Pharmaceutical Company" they were frantic about how I dared to question such a sacred issue...I should be grateful that I am having a Med after all, and some were angry that I dont have to take the Cocktail that they had to sallow 10 years ago...to get to the point...I think with such attitude nothing will ever improve, and the companies will not be under pressure to improve, so lets put aside our arrogance and the idea that we shouldn't question the great companies who are selling us these Meds for 2000 U$ per month when they could sell them for 100 U$.. Its important for us to raise awareness about this issue, we shouldn't go crazy if someone questions side effects or any issue related to this serious illness....
Please lets stop preaching those who are newly diagnosed about how grateful they should be to the Meds available today, but rather lets encourage them to ask and wonder and demand maybe they will force someone out there to spend the billions of Dollars on finding better Meds than wars 
I have to admit : the good thing is that from now on;  I have no option but to succeed , still its ok to worry :))

Offline edfu

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Re: Life expectancy cliché question
« Reply #10 on: June 03, 2009, 04:17:00 AM »
For what it's worth--and forgive me if I come across as bragging ::)--but as one of the dinosaurs on this site, I just want to point out that I'll turn 67 in September.  I've been positive since 1982 or earlier. 
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline AndyArrow

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Re: Life expectancy cliché question
« Reply #11 on: June 03, 2009, 05:32:05 AM »
Then came the time that I questioned the Meds side effects, and although some guys were great enough to comfort me, some were acting as the obedient slaves of the Master " Pharmaceutical Company" they were frantic about how I dared to question such a sacred issue...I should be grateful that I am having a Med after all, and some were angry that I dont have to take the Cocktail that they had to sallow 10 years ago...to get to the point...I think with such attitude nothing will ever improve, and the companies will not be under pressure to improve, so lets put aside our arrogance and the idea that we shouldn't question the great companies who are selling us these Meds for 2000 U$ per month when they could sell them for 100 U$.. Its important for us to raise awareness about this issue, we shouldn't go crazy if someone questions side effects or any issue related to this serious illness....
Please lets stop preaching those who are newly diagnosed about how grateful they should be to the Meds available today, but rather lets encourage them to ask and wonder and demand maybe they will force someone out there to spend the billions of Dollars on finding better Meds than wars 

Telling someone who was recently infected and will only have to take 1 or 2 pills a day that they will have fewer side effects than some who was infected 15 or 20 years ago and has to take upward of 20+ pills a day is simply a fact.  Also, someone recently hiv+ will usually have several different options if they have adverse side effects to their first line of meds.  Many LTS don't have that option.

If you are suffering grave side effects from a drug you are taking I truly feel sorry for you  and I would encourage you to talk about it on the treatment and side effects forum.  However, the big pharma companies aren't exactly monitoring these forums.  You should be talking with your doctor.  Only when the doctors tell their drug reps they refuse to prescribe a drug because of their patients side effects will the companies care.

Often times people who are newly diagnosed think their world is coming to an end (hence the title of this post) and need to be "preached" to (to use your word) that this just isn't so.  They should be grateful for the advances in science, as we all should.  That doesn't mean we should settle for what we have and you should contact your representatives and let them know you want real reform.















« Last Edit: June 03, 2009, 05:45:20 AM by AndyArrow »
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline mecch

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Re: Life expectancy cliché question
« Reply #12 on: June 03, 2009, 05:53:30 AM »
People communicate in certain ways on forums.  There is a natural tendancy to see things as A or B or C when in fact it might be A + B, etc.  Meaning contradictions coexist.  I am new to HIV and new to HAART and I know from experience this year I had a tendancy to not always deal with the contradictions about HIV.

For instance, when I was seroconverting, the big-shot HIV specialist said to "calm down", "normal life will come back" "we have medicine in the pipeline with 0 side effects against placebo."

When it became possible I might needs HAART right away, I asked him, well, why not right away, what's the hesitation.  He said, "side effects". 

So, there you have it. 

NOBODY in this forum is content with the high cost of HAART. 

Nobody pretends that getting infected or getting treatment is a birthday party now, NOR that, in comparision, it is devastating, as it was in the past.

Eventually you will learn to live with all the weird and wonderful/horrile experiences of HIV infection and HIV+ people.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline AlanBama

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Re: Life expectancy cliché question
« Reply #13 on: June 03, 2009, 03:07:54 PM »
"I should be grateful that I am having a Med after all, and some were angry that I dont have to take the Cocktail that they had to sallow 10 years ago"

Honey, I'm certainly not "angry" that no one has to take what we took 20 years ago.  (In fact, I find that statement rather insulting).   As for being grateful that you do HAVE a med to take, well all I can say is that a little gratitude goes a long way.   Imagine if you had nothing to take....

Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline BT65

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Re: Life expectancy cliché question
« Reply #14 on: June 03, 2009, 03:23:48 PM »
Azprince,

No one's angry that you're not having to take the awful meds we LTS'ers had to deal with years ago.  Some of us just sigh in amazement sometimes that some of the newer diagnosed (like you) rattle on and on about the newer meds.  I'm not saying the newer meds are perfect; but trust me, as one who's been there, done that, they do not have a lot of the toxic side effects some of the old meds did.  I don't know anything about how you got infected; I wasn't there and I don't know you, to know what you're being honest about.

So yes, Azzy, you should be grateful.  Like AndyArrow said, if you don't like the meds today, bitch to your doc and tell him to quit taking gifts from the drug companies.  Write to the drug companies and bitch.  At least today you have a variety of meds to take instead of just a couple that could leave you anemic and hurling.  Like my pal Alan said, a little gratitude goes a long way (has your doctor told you to make your will and get a power of attorney, because you only have a couple years left).
  Regards,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Cliff

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Re: Life expectancy cliché question
« Reply #15 on: June 03, 2009, 04:08:06 PM »
I don't think asking about life expectancy is that unusual.  Who hasn't thought about their life expectency when receiving an HIV/AIDS diagnosis, whether it was yesterday or 15 years ago?

Telling someone to basically shut up and be grateful for their meds unhelpful at best, but mostly just dismissive.

Offline Inchlingblue

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Re: Life expectancy cliché question
« Reply #16 on: June 03, 2009, 05:06:59 PM »
Telling someone to basically shut up and be grateful for their meds unhelpful at best, but mostly just dismissive.

I wanted to stay out of this but I can't help it. Nobody has told the OP to "shut up and be grateful for their meds." Everyone has given their input and shared excellent information. I think Miss P's post here was extremely informative and well-written and gave an accurate rundown of the current state of affairs as to why some people are sick and others not.

Maybe AZprince took it the wrong way when someone else said "preach, sister," in response to Miss P's post? I dunno, but chill pills should be taken by anyone who is unnecessarily worked up here. Deep breath, ahhhhhh. Relax ;)
« Last Edit: June 03, 2009, 10:32:50 PM by Inchlingblue »

Offline azprince

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Re: Life expectancy cliché question
« Reply #17 on: June 03, 2009, 07:46:10 PM »
in Short, I guess the last thing that some one who was recently diagnosed needs is to be preached, thats all.
and I am grateful for many things in life but I should never be grateful the company that is charging me a lot of money for a med nor to the crippling system of dealing with HIV. to be complacent is never good to improve things.
Check the web , isnt it amazing that the only activists trying to life the HIV+ travel ban in the US are Canadians!!!!
Guys...instead of Preach Sister how about Mercy sister!
I have to admit : the good thing is that from now on;  I have no option but to succeed , still its ok to worry :))

Offline azprince

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Re: Life expectancy cliché question
« Reply #18 on: June 03, 2009, 07:50:23 PM »
Azprince,

 bitch to your doc and tell him to quit taking gifts from the drug companies.  Write to the drug companies and bitch.  At least today you have a variety of meds to take instead of just a couple that could leave you anemic and hurling.  Like my pal Alan said, a little gratitude goes a long way (has your doctor told you to make your will and get a power of attorney, because you only have a couple years left).
  Regards,
Betty
I will bitch about it a lot! that you can be sure of, I will even start advocating for buying Meds from abroad cuz they are cheaper, thanks for inspiring me
I have to admit : the good thing is that from now on;  I have no option but to succeed , still its ok to worry :))

Offline azprince

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Re: Life expectancy cliché question
« Reply #19 on: June 03, 2009, 08:01:15 PM »

 But, of course, to the newly infected there's that OMGPEOPLEARESTILLDYING meme. 
.  .....................Then there's a group of denialists.  Then there's a group of what I call "denislist-lite" -- they don't deny HIV, but they're in denial and don't obtain regular treatment, take medication and what not.  Then there's a group with pre-diagnosis mental issues that only worsen when faced with a chronic disease and that interferes with regular treatment, medication schedules etc.  Then there's the poverty cases, homeless, alcoholics and hard core drug users/addicts -- go to any public HIV clinic and sit in the waiting room for 3 hours and you'll get the picture.  Lots of resistance issues build up in those groups, etc.  Also factor in newly diagnosed individuals that didn't learn of infection until they had 1 t-cell left.

.....................  Try taking 25 like I do and let me know what you have to whine about.

Great ! simply great words! thanks
I have to admit : the good thing is that from now on;  I have no option but to succeed , still its ok to worry :))

Offline BT65

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Re: Life expectancy cliché question
« Reply #20 on: June 03, 2009, 09:22:37 PM »
Puh-leeze.  No one said to "shut up and be grateful."   I believe that's called putting words into people's mouths. 

Chill pills?  This board doesn't get me frazzled anymore.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline YaKaMein

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Re: Life expectancy cliché question
« Reply #21 on: June 04, 2009, 12:08:24 AM »
Am glad to hear all our perspectives ... I figure that's the value of the forums.

Mine WON't focus of my life expectancy ... but on living my life and continue plans and dreams. Many die far too early ... wars, diseases, accidents .... WTF. I"ll check with the Psychic Friends Networks to find out what's in store this weekend. Having a blast and blast of air too. -YaKa ;D
09/11 Endocrine Consult
08/11 CD4 328 14.9% VL 0
 Disc'd Bactrim DEXA -3.1 Tscore
03/11 CD4 338 14.7% VL 0
11/10 CD4 300 14.3% VL 0 <20copies
07/10 CD4 336 14.0% VL 0 DEXA -2.7 Tscore
03/10 CD4 308 13.4% VL 0 Vit D normal
01/10 Began FOTO
11/09 CD4 274 13.7% VL 0 Chol 173 Trig 131
07/09 CD4 324 13.5% VL 0 DEXA -3.1 Tscore lumbar
03/09 CD4 207 10.9% VL 0
11/08 CD4 227 10.3% VL 0 Chol 176 Trig 156
04/08 CD4 228 9.5% VL 0
01/08 CD4 194 9.0% VL 0
09/07 CD4 176 8.3% VL 0
03/07 CD4 130 9.5% VL 0 Chol 261  Trig 227
12/06 CD4 109 6.4% VL 0
09/06 CD4  88 5.5% VL und desens'd rtd to Bactrim
08/06  Began Atripla
07/06 CD4  59 5.0% VL 145 Chol 117 Trig 104
06/06  Bactrim rash, X2 Dapsone
 EFV & Truvada Chol 128 Trig 131
05/06 CD4  6 (2.0%) VL 78667 only V179D mutation Dx PC MAC

Offline jughead

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Re: Life expectancy cliché question
« Reply #22 on: June 04, 2009, 01:19:19 AM »
When I started meds shortly after being diagnosed less than a year ago (with a CD4 count of 28), I was afraid to ask my doctor what my life expectancy was.

Now, after responding well to treatment and raising my cd4 from 28 to 290 I finally asked my doc. She said my life expectancy was "normal" ... and I happily accept that. Maybe I'm naive, but I feel a lot better.
 :) 
Peace and Love to everyone,

Jughead

Offline a2z

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Re: Life expectancy cliché question
« Reply #23 on: June 04, 2009, 02:52:51 AM »
... and the companies will not be under pressure to improve, so lets put aside our arrogance and the idea that we shouldn't question the great companies who are selling us these Meds for 2000 U$ per month when they could sell them for 100 U$.. Its important for us to raise awareness about this issue, we shouldn't go crazy if someone questions side effects or any issue related to this serious illness....
Please lets stop preaching those who are newly diagnosed about how grateful they should be to the Meds available today, but rather lets encourage them to ask and wonder and demand maybe they will force someone out there to spend the billions of Dollars on finding better Meds than wars 


A nice thought.  Far from reality, but a nice thought.  And I'm not trying to talk down to that line of thinking.

I'm not against companies making money off of HIV, because if there was no potential for money, there would be no research and as a result we still  might be in the AZT days.  (Though I recall something about Abbot and an unfair price raise on Norvir.)

And eventually, the drugs we have today will be cheaper, as patents run out.  Though it's not going to happen for a great deal of time with most of them.  I am hoping soon they come up with a approach to suppress the virus (a la Progenics PRO 140) and raise T-cells with a couple of monthly injections.
Dates are blood draw dates:
09/21/09: CD 898 27.0% VL 120 - back on track, same meds.High level enzymes, but less so
06/15/09: CD4 478 21.8% VL 1150 - high liver enzymes... looks like I may not be resistant
05/22/09: Fixed insurance, resumed medicine
04/17/09: Ran out of medicine, could not resolve insurance problems
04/01/09: CD4 773 28% VL 120 - high liver enzymes
12/01/08: CD4 514 23% VL 630
10/17/08 started Reyataz, Norvir and Truvada. -- possibly minor neuropathy, but otherwise okay.
9/10/08: CD4 345 17%, VL > 78K
8/18/08: CD4 312 18%, VL > 60K (considering meds)
12/19/07: CD4 550 28% VL > 100K (no meds yet)
Diagnosed 10/23/07

Offline Cliff

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Re: Life expectancy cliché question
« Reply #24 on: June 04, 2009, 03:09:02 AM »
When I started meds shortly after being diagnosed less than a year ago (with a CD4 count of 28), I was afraid to ask my doctor what my life expectancy was.

Now, after responding well to treatment and raising my cd4 from 28 to 290 I finally asked my doc. She said my life expectancy was "normal" ... and I happily accept that. Maybe I'm naive, but I feel a lot better.
My first doctor said the same thing, without me asking, but it was on my mind.  I don't think I completely bought it then and don't think I do now.  I'm not even sure I care if I have a normal life span (i.e., 86 years). 

Maybe it was more about guilt/punishment, and being pissed off that something I did resulted in me cutting my life short by say 20 years!

Offline mecch

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Re: Life expectancy cliché question
« Reply #25 on: June 04, 2009, 01:19:30 PM »
I fully expect my Grandma to easily make it to 100, like several of her kin.

Me, hmmmm, I fear when I look in my crystal ball - fear sickness and poverty.  Like at retirement age. 

Being neither sick nor poor now, I have to GET OVER MYSELF and live more for now, in the moment.





“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Tar Heel

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Re: Life expectancy cliché question
« Reply #26 on: June 04, 2009, 02:45:44 PM »
I've been poz 4 years.  I went to the doc yesterday and my counts keep dropping- last % was 22, last cd4 was 391.  He started me on Atripla.  I asked him what my life expectancy would be without the med and he said 'less than 4 years.'    But with the meds, a normal life expectancy.
"So much has been given to me that I have no time to ponder on that which has been denied." ~ Helen Keller

Offline Miss Philicia

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Re: Life expectancy cliché question
« Reply #27 on: June 05, 2009, 12:00:12 AM »
I never asked a doctor what my life expectancy was, and that spans cd4s of ~160 to 1,000 -- I guess I don't particularly care.  When I die, I die.

.. to fast to live, too young to die

- Commander Salamander

I'd miss a good Five Guys cheeseburger though if I croaked tomorrow, but then I just ate on on Tuesday.
"I’ve slept with enough men to know that I’m not gay"

Offline moskimo

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Re: Life expectancy cliché question
« Reply #28 on: June 06, 2009, 06:54:16 AM »
i am not perturbed about how long i will live but how i will have children without passing the virus to my wife. i dont mean by sperm washing because here in south africa its not avalaible. i started meds two months ago and now its no longer a big deal unlike before i started, i promised myself that i will live to celebrate my 80th birthday.the side effects are non exiistent and i dont wonder if i will be infected with hiv again because it has been my worst fears until i got tested,i thought it will be the end of my world.please people dont you think that the drug that will eradicate this virus is not far in the future,dont you reason that very soon we wont have to pretend that this virus does not exist,that  people will queu in lines to get tested and to get vacinated. like martin luther king jnr saw in his vision that segregation will end in the US, that is my vision today that sooon very sooon hiv will be like the ordinary flu.quote me.

Offline azprince

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Re: Life expectancy cliché question
« Reply #29 on: June 07, 2009, 10:37:35 PM »
i am not perturbed about how long i will live but how i will have children without passing the virus to my wife. i dont mean by sperm washing because here in south africa its not avalaible. i started meds two months ago and now its no longer a big deal unlike before i started, i promised myself that i will live to celebrate my 80th birthday.the side effects are non exiistent and i dont wonder if i will be infected with hiv again because it has been my worst fears until i got tested,i thought it will be the end of my world.please people dont you think that the drug that will eradicate this virus is not far in the future,dont you reason that very soon we wont have to pretend that this virus does not exist,that  people will queu in lines to get tested and to get vacinated. like martin luther king jnr saw in his vision that segregation will end in the US, that is my vision today that sooon very sooon hiv will be like the ordinary flu.quote me.

I join you in the hope, I really think that in Europe they will have better chances in finding not a vaccine but a way to eradicate the virus from the body once and for ever, but this of course will cause some major issues such as the increase in MSM and population in Africa...but still I feel that it will happen in the coming 10 years, I pray
I have to admit : the good thing is that from now on;  I have no option but to succeed , still its ok to worry :))

Offline Inchlingblue

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Re: Life expectancy cliché question
« Reply #30 on: June 08, 2009, 04:15:36 PM »
I came across a Q&A about life expectancy on thebody.com in which the doctor responded:

In one study, once a person had their virus undetectable for 5 years and kept their CD4 count over 500...the life expectancy was the same as a person without HIV!

LINK:

http://www.thebody.com/Forums/AIDS/Meds/Current/Q201906.html

I was watching the Tony Awards last night and Jerry Herman won a lifetime achievement award. He is now 77 years old and has been poz since 1984, long before there was any kind of treatment at all.

I think the scariest thing about HIV right now is not having access to the best medications available. Or having access but losing it and therefore, having to spend a period of time without meds while you figure out new coverage etc. These situations can lead to unnecessary resistances and to failing therapy.
« Last Edit: June 09, 2009, 09:44:36 PM by Inchlingblue »

Offline azprince

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Re: Life expectancy cliché question
« Reply #31 on: June 09, 2009, 09:32:19 PM »
I read the thing about the 5 years , and although now I understand that life expectancy is getting higher every year with the advancement of  medicine, I am only wondering if as you said the Meds prices will ever drop any soon so that people can really consider HIV a Chronic illness no more than any other illness with the same cost!
I have to admit : the good thing is that from now on;  I have no option but to succeed , still its ok to worry :))

Offline Inchlingblue

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Re: Life expectancy cliché question
« Reply #32 on: June 09, 2009, 09:43:07 PM »
I read the thing about the 5 years , and although now I understand that life expectancy is getting higher every year with the advancement of  medicine, I am only wondering if as you said the Meds prices will ever drop any soon so that people can really consider HIV a Chronic illness no more than any other illness with the same cost!

Well, eventually there will be generic versions of the better drugs that are available now. I'm not sure how long patents last, at least 10 years (maybe 15?). Right now the generics that are becoming available are the drugs that are not considered very good so it's not any help. There have been threads on the forum regarding generic Atripla (called Viraday), which can be purchased online and it's much cheaper than regular Atripla.

It isn't ideal but if one had no other choice then it's perfectly understandable, to buy generic Atripla I mean.

Offline edfu

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Re: Life expectancy cliché question
« Reply #33 on: June 09, 2009, 09:52:41 PM »
Drug patents in the U.S. last for twenty years, but they are applied for before clinical trials testing for their effectiveness begin.  By the time the new drug is approved by the F.D.A., the actual amount of time the drug is protected by patent on the open prescription market is usually around seven to twelve years.  There are other complications and events that can increase or decrease the amount of time for patent protection before a generic version can legally be sold in the U.S.   
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline Moffie65

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Re: Life expectancy cliché question
« Reply #34 on: June 10, 2009, 08:15:51 PM »
what should I expect, can all of us see the day that an old 80 year old man is HIV+....can you give me some recent studies in that regard...please

AZprince,

Please don't feel bad asking this question, as most of us have asked it in the past; at the very least to ourselves.  

After dealing with HIV/AIDS for the past 26 years; I have found that the best thing I can tell you about living with HIV is, "If you are not living each day you are given to the fullest, then it makes no difference on which day you die".  

You could very well be missing out on the fullness of life if you are spending much time worrying about how long you will be given to live, so I highly recommend that you, and many others new to this illness; pick it up, and start living each day as though it were your last, and your life will be full and rich!


P.S.  I forgot to add that I am 62, and hope to live as long as Larry Kramer at 74, but really don't care how long I live, because I live each minute as though it is my last.

« Last Edit: June 10, 2009, 08:19:15 PM by Moffie65 »
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline emeraldize

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Re: Life expectancy cliché question
« Reply #35 on: June 11, 2009, 03:25:28 AM »

Check the web , isnt it amazing that the only activists trying to life the HIV+ travel ban in the US are Canadians!!!!


This is not accurate. There are many US folks, including members of this site, who have been active about lifting the travel ban. If websites are your only measure of activism, I would like to suggest that your measuring system needs an upgrade. Much in the world of activism, no matter the focus, goes on at less visible and quite effective levels such as letter writing, phone calls, and personal appeals.

Offline azprince

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Re: Life expectancy cliché question
« Reply #36 on: June 13, 2009, 08:51:13 AM »
AZprince,

Please don't feel bad asking this question, as most of us have asked it in the past; at the very least to ourselves.  

After dealing with HIV/AIDS for the past 26 years; I have found that the best thing I can tell you about living with HIV is, "If you are not living each day you are given to the fullest, then it makes no difference on which day you die".  

You could very well be missing out on the fullness of life if you are spending much time worrying about how long you will be given to live, so I highly recommend that you, and many others new to this illness; pick it up, and start living each day as though it were your last, and your life will be full and rich!


P.S.  I forgot to add that I am 62, and hope to live as long as Larry Kramer at 74, but really don't care how long I live, because I live each minute as though it is my last.



I wish you another 20 years filled with happiness and love..... you can take more than 20 years but they will be with out my wishes loll...I only give you 20 that come with happiness
I have to admit : the good thing is that from now on;  I have no option but to succeed , still its ok to worry :))

Offline HIVworker

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Re: Life expectancy cliché question
« Reply #37 on: June 14, 2009, 11:55:52 AM »
Well, I'm walking on some thin ice replying to this thread, but I'll do so anyhow. I always read threads like this with great interest as it gives the best sort of perspective as to living with HIV.

I've learned that one should never say, "Normal life expectancy" and "HIV is like diabetes" from posts such as this one. In fact I cringe whenever I hear someone say it and quietly point out another perspective when people do.

I really wanted to point out a trend I have seen at a lot of HIV meetings - one that really made me sit up and think was the recent CROI meeting in Montreal. There is a huge emphasis on HIV and aging now. A realization that people with HIV are living much longer and that more focus should be made on living with HIV. From possible accelerated aging due to chronic inflammatory responses to long term side effects from HAART.

People are realizing that the 'first wave' of HIV medication and treatment is coming to a close and that more focus should be on HAART therapies that are easier to take and that have less side effects.  People are talking more seriously about eradication and studies of LTNP's to see what can be done to make everyone that way.

How long will anyone live? Who knows, but at least things have moved in the right direction. At least from where I stand, HIV will never become the 'forgotten' disease where people think it is like Diabetes and can be cleared up with a bunch of pills. There is no pill for the stigma and ignorance that still exists except a cure.....so lets get started with that then...
NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Offline Inchlingblue

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Re: Life expectancy cliché question
« Reply #38 on: June 14, 2009, 02:31:20 PM »
I think the comparison of HIV to diabetes has more to do with level of difficulty in controlling each. What my doctor said to me was that nowadays HIV is easier to control than diabetes. We know that as long as there are no resistances and a person is adherent to their meds, their HIV will be controlled. And side effects are becoming more and more tolerable (although there's always room for improvement).

Someone with Type 1 diabetes has a very very hard time controlling it, even with today's advancements. It's very tricky to get your insulin just right and to measure exactly, to the ounce, what you are eating, to basically keep track of every last calorie that you consume. And if you don't do all of this, at least reasonably well, the complications that can arise are quite devastating.

I don't think it's a contest as to which disease is worse, and HIV definitely has more stigma attached, so in many ways it's a toss up. But, as stated above, I think the comparisons come in when one is talking about how difficult it is to control each disease and, in that regard, HIV "wins."
« Last Edit: June 14, 2009, 02:33:39 PM by Inchlingblue »

Offline sammolloy

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Re: Life expectancy cliché question
« Reply #39 on: June 14, 2009, 05:33:25 PM »
I guess all us Pozzi's tend to appreciate our life a whole lot.
Never Give Up

Offline LordBerners

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Re: Life expectancy cliché question
« Reply #40 on: June 14, 2009, 05:39:51 PM »
My main concern is insecurity over access to hiv medicines and health care in general.  I'm currently getting it for free but that's not going to last much longer.  Getting from your forties to your eighties under expensive medical care is not easy to envision when you're a destitute and come from a country which does not provide a public health care system.
Please, just call me Berners.. or Baron.

Offline midland moe

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Re: Life expectancy cliché question
« Reply #41 on: June 14, 2009, 06:05:16 PM »
when i was diagnosed i was full blown 85 t cells and pcp pneumonia, thrush, and cmv in my blood after i told my wife i was poz i assumed i would die in a matter of days, and at first i didnt care. i got worse and was in intensive care and then one day someone tapped me on the shoulder and they were holding a picture of my daughter....it was my wife...she told me she needed me to get better so i could come home because my daughter and her needed me there...im not going to lie and say my wife and i got closer because of...not by a longshot, but just hearing her say she needed me  to come home made me fight my way back to health and home...when i was leaving the hospital the ID doctor told me the meds must be strictly adhered to more than 95% of the time (less than 1 out of 20 dosing screw ups) or it was only a matter of time til i would be back in the hospital and next time might be the time i dont get out. ive been taking atripla for a year and have been undetectable since 1 month after i started taking it. no side effects at all and im told i will live to be old enough to die from whatever it was i was going to die from before i got HIV. healthwise i feel better than i have in YEARS, the slippery slope of immune destruction caused nagging illnesses one after another for 2 years before i was diagnosed.
Diagnosed + 4/15/08               VL 570,000  cd4  85
started ATRIPLA 7/20/08         VL 301,757  cd4  45
8/22/08                                 VL       171  cd4  185
11/25/08    undetectable                           cd4  371

03/30/09    undetectable                           cd4  464
07/07/09    undetectable                           cd4  419
12/04/09    undetectable                           cd4  534
        cd4 % 20
04/09/10 undetectable                                cd4  667
         cd4%  22.1
07/16/10   undetectable                              cd4  573
         cd4%  23.8
03/25/11   undetectable                              cd4  655
         cd4%  29.4

 


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