Analysis: HIV life expectancy now `normal`

[trellium]

Analysis: HIV life expectancy now `normal`

http://news.monstersandcritics.com/health/article_1194677.php/Analysis_HIV_life_expectancy_now_`normal`



TORONTO, ON, Canada (UPI) -- A decade ago, when a doctor diagnosed a patient with an infection caused by human immunodeficiency virus (HIV) -- the microbe responsible for AIDS -- that individual faced a bleak and short future.

The disease was usually advanced, the treatments were limited and a patient`s life expectancy was in the neighborhood of about two years.

'Today, I can tell my patients with HIV that they can have a normal life expectancy,' said Stefano Vella, director of drug research and evaluation at the Institute Superiore di Sanita in Rome, the equivalent of the U.S. National Institutes of Health.

Of course, there are some caveats, Vella told United Press International, the chief one being that the patient has to take the prescribed medicines faithfully; another, that patients have access to treatment.

'We have so many medicines now and they are so good that we know we can keep the virus suppressed for years,' said Vella, a former president of the International AIDS Society, the organization that ran last week`s record-setting International AIDS Conference in Toronto, Canada.

For patients in the United States and in the rest of the world where access to the antiretroviral drugs is available, Vella said that physicians can construct potent lines of long-lasting, well-tolerated treatment.

For example, in 1998, Abbott Laboratories enrolled 100 patients in its initial major study involving the protease inhibitor lopinavir, boosted with a small dose of another protease inhibitor ritonavir. Together, the drug is prescribed as Kaletra.

Of that original group of 100 patients, 61 remain on Kaletra and 59 percent of them have HIV viral loads that cannot be detected in the blood with standard assays eight years after starting on the drug.

When the virus is suppressed to undetectable levels, researchers say, the ability of the microbe to mutate and escape the drug is limited. As long as patients stay on combination therapy that has been the mainstay of treatment since 1996, the virus is thwarted from destroying immune cells and cannot create an immunosuppressed environment from which obscure and deadly AIDS infections can arise.

'We can now have drugs that allow us to construct second, third and even fourth lines of treatment that are all capable of suppressing the virus,' Vella said. 'What`s more, we are going to see even better drugs in just a couple of years.'

'Our new treatment guidelines,' said Scott Hammer, professor of medicine at Columbia University in New York, 'encourage doctors to treat even the most-experienced patients with an eye to suppressing the disease.'

Hammer told UPI that these patients -- subjects who have been treated with drugs since the earliest days of the AIDS epidemic -- often have virus species that have developed mutations that make many of the treatment options unusable.

However, two of the newer protease inhibitors, tripanivir and darunavir, were specifically designed to overcome the virus that have developed resistance to other antiretrovirals, he said.

Vella pointed to the impressive debut of investigational integrase inhibitors, a new class of drugs that attack an enzyme required by the virus to replicate. The integrase inhibitor MK-0518 worked as effectively as the best treatment available for individuals who have not previously received antiretroviral therapy. What`s more, MK-0518 worked significantly faster in lowering virus in the blood.

The ability to hold the virus at bay for years now has doctors looking far forward in treating patients because 70 percent of patients infected with HIV will die of something other than AIDS, said Eric Daar, chief of HIV medicine at Harbor-UCLA Medical Center in Los Angeles.

Instead of just focusing on HIV levels, he said during a symposium at the conference, doctors have to tailor the medicine to the patient since 9 percent of HIV patients are now dying from heart disease. Another 15 percent die from liver disease and 8 percent die from cancer.

But with the number of drugs available, 25 are being marketed currently, Daar said clinicians can find potent combinations that suppress the virus and do not raise cholesterol or liver enzymes.

'We know the benefits of antiretrovirals far outweigh the risk of heart disease,' Daar said. And he said that before getting too worried about what regimen to use to protect specific organs, doctors would be wise to have HIV patients get other risk factors under control -- including cessation of smoking.

'HIV is a chronic disease,' Vella said. 'If patients stay on their medicines, they will live a normal lifetime.'

Adherence or compliance with the regimens - one of which has now been simplified to one pill once a day - has been a problem in the past because of numbers of pills required and because all drugs have adverse side effects.

Doctors and patients have been seeking drug treatments that lessen the number of drugs involved in these regimens in experimental programs.

'These regimens may look good,' said Mark Wainberg, director of the McGill University AIDS Research Center, 'but they are not ready for prime time.'

 

[Alain]

.

[IzPoz]

I want to make Love and be Loved without being worried back.

I agree with you here.

As for "normal"... While we are facing a tough battle with HIV, we could go out this afternoon and (God forbid!) get hit by a bus, or some freak accident like some mechanical object falling off an airplane and into your house... (it's happened down here!!)...

Take things day by day.  All else is gravy.

[jkinatl2]

Yay, AIDS is over. We can all pack up shop and go home.

[newt]

Normal life expectancy and normal life are two different things. 

However, right now, right here, I feel normal.  Things may change, but right now....this seems unfair somehow, but it's dishonest not to say, this is my right here, right now experience.  And I know it's not others' experience, including many of my friends, and that it may change. But right now, right here...

- matt

Now playing: Neil Diamond, I Dreamed a Dream

[Life]

Izzy, normal to me is when the plane flies over my house, they don't hit the "Dump Toilet" button in the cockpit...  Thats normal for me..  

[ImagineFL]

Normal is as normal does...

Everyone has a different definition of normal.  My life is not the same as it used to be, I'll admit that.  But it is better then it could be without all these drugs.

Patrick

[terpie82]

The researcher made a clear point that it was normal life expectancy and not normal life, which would have been a dilemma averted if we are to take his words seriously. And a "normal" or average life expectancy for males/females from birth (2006 estimates) is 75.02/80.82 years and the adult HIV/AIDS prevalence rate (2003 estimates) is 0.6% (https://www.cia.gov/cia/publications/factbook/geos/us.html). I'm curious to know how many of the 0.6% can benefit from this provided they remain undetectable throughout their entire left. Lord forbid, I may one day not be undetectable anymore and so my life expectancy would decrease. I sometimes cringe at such public statements. My physicians at NIH tells me I will have a normal life expectancy in the confines of the clinic room which I think is appropriate, but to state it publically? I can see it now, someone who is HIV- will read this guy's words and think HIV/AIDS is probably not a big deal anymore and will go out and have unprotected sex because he/she can have a normal life expectancy on the off chance he/she contracts the virus. And isn't it ironic that this guy is the director of "drug research and evaluation"? Can we say money, money, money, moneeey...moneeeeey! Or maybe I'm just reading too much into this 

[Miss Philicia]

Normal life expectancy and normal life are two different things. 

Exactly what I was going to say.

However, as I was diagnosed with sub 200 CD4's in '93 I just assumed I'd be lucky if I saw the new millennium come.  If I had known I'd still be alive in the present year I'd not have done so many stupid things in the interim.

[LatinAlexander]

This is a VERY dangerous statement...This simply hides the fact that people may STILL DIE FROM AIDS...and that automatically can be translated in no more research, no more new medicines...

Alex

[Cliff]

What strikes me as odd, is that one can say that the life expectancy is near normal, but then the following is also reported...

Instead of just focusing on HIV levels, he said during a symposium at the conference, doctors have to tailor the medicine to the patient since 9 percent of HIV patients are now dying from heart disease. Another 15 percent die from liver disease and 8 percent die from cancer.

That doesn't sound like normal distribution of those diseases and I would willing to bet that if you look at the age of those dying from those conditions, (for positive individuals), it's much younger than the general population.

I do get the point of the message, that things are improving for people living with HIV.  And that's certainly true.  But I haven't seen enough reports from statisticians that the life expectancy of those with HIV matches that of the general population.  But if it does, can someone please inform the disability and life insurance companies of this fact.

[Jacques]

(note:that picture was found on the Net.)

This guy as now a normal life expectancy. Do I have to explain what kind of life quality he is now having?

I wish that those statisticians got the virus, so they would realize how long a normal life could be for those already infected.

I don't applause to that news.

Jacques

[Sky]

Though it is very true that a normal life vs a normal life expectancy are quite different, baby steps in the right direction are still something good.  There are a lot of people that have commited their lives to making ours easier.  They've given us and doctor's a basic set of tools to prolong our lives, now they just need to fine tune them to make us have a better life...a more "normal" life.

[Life]

Jacques, the picture says a thousand words.  I think the people that use the word "NORMAL" are normal.  If the bean counters were positive, it would be another story...  In my short experience, we as a community cannot even comprehend the word, nor should we allow it to be associated with HIV/AIDS.  Is it normal to see a Infectious disease doctor every 2 or 3 months?  Is it normal to spend 2000 dollars a month to stay alive?  Is it normal to have liver, kidney, heart problems within 10 or so years?  That's not normal for me...  Quality Normalcy or "QN" not to be confused with "PN"... I want that!

I would also on the other side - say this - The Gentlemen depicted in the photo has been thru a great deal.  Ever so much more than the newly infected.  For the newly infected, living with hiv,  their chances, their choices are indeed better.  But that's the way science is.............

That's all...

[Cliff]

The message here is that quality of life is just as important as longevity.  And while improvements have been made to longevity, perhaps it would behoove the medical community to also focus on improving the quality of life as well.  That message shouldn't take away from the great strides made in terms of longevity, but perhaps also adds a complexity to the situation, that some people may take lightly.

I remember reading, when I first became positive, this pamphlet on the possible side effects of taking HIV meds.  It got to facial wasting and said a bunch of stuff about the condition, but the only thing I remember from that pamphlet, was that it said 'some people actual like having a more angular face.'  I always thought that was an odd thing to write to folks who are facing potentially body-altering drugs.  It certainly didn't make me feel more comfortable about facing the prospect of facial wasting.

Yes, we should applaud the improvements to longevity.  But we should also make sure people understand that we are also concerned with quality of life as well.

[MC]

MMMMMM
I tested poz on july 31st.
I cant imagine id ever feel normal again?
HIV HIV HIV..........in my head.........HIV HIV HIV!!
I didnt ever know that before July 31st.Thats just simply not normal........
MC

[newone]

Over 40, gay, single and hiv+..I am really depressed!!

[manchesteruk]

Like Matt said the important thing to remember about this article is that at no point did it say people with HIV now lead normal lives no one could argue that was the case.  It says they have the chance of a normal lifespan that's totally different.  Just look at the situation 10 years ago compared to today the drugs are substantially better and who's to say they won't be much better in another 10 years.

[Jeffreyj]

This is sending a totally false message. Oh great, I wonder how many people saw this and say "see, i just take pills and live a normal life! Who cares if I get HIV. YAHOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO.
I think this idiot should SHUT HIS IDIOTIC MOUTH. It's crap like this that KILLS people. Normal MY ASS

[bobik]

I agree with all of you and yet: I am glad that the statistics tell me that I might get 80 years old or even older. I love life.

Coen

[Moffie65]

'Today, I can tell my patients with HIV that they can have a normal life expectancy,' said Stefano Vella, director of drug research and evaluation at the Institute Superiore di Sanita in Rome, the equivalent of the U.S. National Institutes of Health.


Sorry ladies, this might be considered a "blue post"...

I have a nice hard dick this man/person can sit on.  A viral protein he should sample for himself.  A life of struggle he needs to consider.  All in all, this is such a load of crap, it makes me want to puke!  Unfortunatley, this could have been stated, (and has been) by our own resident idiot; Antony Faucci, director of HIV research at our own NIH.  I have personally chewed out this asshole more than once in my life, and I encourage you all to do the same.  He hates being called out by people actually "Living with this virus".

I must tell all of you people, Arizona is growing fatigued at my insistance that HIV is not a "Chronic Condition" and each and everytime I remind them of it, they need to ask the one spewing this shit if they are living with HIV, and if they have first hand knowledge of anyone doing so.  The answer is always delivered with a blush of guilt, for listening to assholes around the globe that have an agenda permiated with Massive FUCKING Profits from BIG PHARMA!!!!! Please guys, don't make me get on my soap box with you all, you need to get active and quit your complaining about idiots with money, spewing crap for the edification of their own egos, and research purses.  Access is granted for speaking your mind very easily, as few will argue with someone living with HIV.  

I am now pissed, and I have to get in my car and drive 60 miles to go get a blood draw, to once again show that non-detectible is pretty much a dream for many of us.  And Coen, please tell me how many Long Term Survivors you actually know have been studied that have lived to 80 years old.  Please don't let data that is unsubstantiated be something you trust for your life plan.  Live today and fuck tomorrow!

It is now time for me to go puke!!!

In total AWE!

[jack]

I understand why everyone is pissed at this article, but I think its important that people know that they are likely to have a normal life span. Sure a lot better than the first time I went in and the Dr. told me I would be history in two years. BUT is also important to emphasize all the bad crap that happens to you in the normal life span if you have HIV. My experience with even the most empathetic hiv drs. is they don't wanna hear about the sides or other problems, their concern is that you are still alive and most of the crap is just your imagination.

[David_CA]

Like Jack, I can understand why so many are pissed about statements like in this article.  Actually, I'm glad to hear this sort of data.  Without it, what hope is there?  I wonder how many who've this virus has already killed would like to be alive and have the opportunity to even hear this news?  I'm sure I'll find out soon enough how badly the drugs will effect me.  I know that I'll not feel 'normal' a lot of the time.  I'm also glad to hear that I most likely won't die in a couple of years.  Without this hope, why eat properly, like so many advocate?  Why drink lots of water and exercise?  Why not give up completely?  Maybe at some point I will give up.  But now, for a newly diagnosed person, I NEED to hear that there is hope.  I NEED to know that maybe I'll be around to see a cure.

I don't think this is sending the wrong message.  Agreed, it may be an incomplete message.  I certainly never thought that HIV would enter my life, but I wasn't negligent in my actions because I thought HIV was a 'manageable' condition.  I just wasn't as aware of transmission as I should have been. 

That pic of the guy posted... I wonder how long he's been on meds?  I bet it's a long time.  Hopefully, the newer drugs won't be as harsh on us.  Time will tell.  In the meantime, I'll try to exercise and eat well, take meds (when prescribed) faithfully, keep my appointments, and keep hoping to live to see the day when my husband and I will be cured.

David

[jack]

Do meds cause the sunken face appearance? I don't know. I have it a little but its my swollen parotid glands that make me look like someone I don't know and my friends don't know. I do remember seeing the sunken cheek look in early to mid 90s, so they couldn't have been on meds too long.
Everyone seems to be effected differently by different meds. You can hide the lipo fat deposits below the neck and the skinny limbs but you cant hide your face and the sunken face thing is like wearing a neon sign that you have aids. I feel very fortunate that I have not had it as bad as some.

If someone had assured me that I would live a normal life span, I know I would have made many different career,personal, and financial choices over the past 17 years.

[bobik]

Hey Tim, Moffie,

I choose to be optimistic. That is my way of surviving. It is the same theme as the expectations threat: I can't live with the idea that I might die soon, so I choose to ignore it, and hope to get 80, and live my life as if I am going to.

I am afraid, when my liver enzymes go up, when I get gout, when my cholesterol is too high, and I know damn well that things might be different. I agree with everything that is being said here. But I need the optimism, without that I would have been dead before HAART was even there.


Coen

[blondbeauty]

Compared to what we had in 1986, the future is much better. So I think there is a reason to be optimistic and thankful for all the research that has been made (for money, philanthropy or whatever other reason).

[Moffie65]

This is for Coen,

I want to apologise for calling you out.  You guys in Europe have a damn sight better chance of living a full life than those of us here in the United States. 

Our present government is doing it's damnedest to make sure none of us have the support we need in the future.  They are trying to make HIV no more caustic than Arthritis.  I have a paper here, published by the HHS, which is our top department in doleing out care, meds, and a certain future.  There is every effort to diminish this disease to a mere headache, and with the overhaul of Medicare, they are plotting to make it most difficult to in fact, "LIVE" with HIV.  Please don't take my commentary personal, as I understand the need to be optimistic.  Optimism is one thing I have stressed here more than once, and it has truly helped me to survive this long.  What I don't want U.S. Citizens to ever take for granted, is the continuation of the level of services that they now appreciate.

YOu know WAR is HELL, and it is damn expensive.  Those of us who are a drag on the budget need to be very astute in our guardianship of the health care we have.  Something I wish not to take for granted.

In Love

[RobT]

Thanx for posting this. I remain optimistic that if ppl who r living w/ HIV continue to take care of themselves and seek treatment, then a 'normal' life expectancy cud b obtained. I know that w/ all the medical advances that these things cud happen. I just don't want the naive to read stuff like this and think all they have to do is take pills and HIV will go away. I hope that this post does not also equate to less medical advances and breakthroughs in the coming yrs.
What really classifies as 'normal'? I do not think having to get blood draws every month is considered normal, nor do I believe that putting up w/ all the side-effects of these powerful drugs is normal either.  Nor do I think spending $2000 and up on meds is normal either. There is nothing normal about any of this.
I just hope that there will b continued medical advances to put an end to this wretched bug.

RobT

9/27/2005-1st test results
Viral Load >1,000,000
CD4 204
CD4%age 18
CD4/CD8 ratio .23
11/24/2005- Sustiva/Truvada
04/18/2006
Viral Load 140
CD4 402
CD4%age .21
CD4/CD8 ratio .39
06/27/2006
Viral Load 42
CD4 409
CD4%age .21
08/01/2006
Viral load- undetectable
CD4 493
CD4%age .33

Next lab: 09/01/2006

[MC]

RobT
Congrats on all your tests. I find it to be really inspiring!!
MC

[carousel]

.

[bocker3]

OK -- I have to add my 2 cents here.......

First, as others have pointed out, saying one may live a "normal life expectancy" is NOT the same as saying one may live a "normal live" (whatever that is....).  Am I hopeful that I will live at least as long as I would have without this damn virus.....  of course I am -- why would I be doing all I'm doing if I thought it was in vain.  If at some point down the road, I die due to an "AIDS illness", does that mean hiv cut my life short?  Perhaps -- but maybe not.  Let me explain -- Since I found out my status last year, I have made a number of changes to my life.  I eat better, exercise more, get more fiber, try to be aware of stress and do something about it, try to sleep more, floss daily etc.  Without these changes I may have been one of the many men in my family who was destined for an early demise from heart disease.  Of course, I still could die of heart disease, the point is, I didn't know when I was going to die before the virus and I don't know when I will with the virus. 
Today, I try to not get caught up in things I can't control -- I'm not perfect at this, as anyone who read my thread about not yet getting to undetectable can see, but I'm trying far more now than I did a year and 6 days ago, when I still thought I was "negative".  I do not mean to imply anyone is wrong in what has been said here -- indeed, there is a tremendous danger that people are getting a bit jaded about the dangers of hiv and there is a definite possibility that our "drain on the budget" will cause some changes.  We must insure that we keep people aware -- but giving those of us living with hiv some hope that we aren't going to die tomorrow from this virus (remember those early days after your diagnosis......) is not a bad thing in my book.  Is my life "normal" now??  Hell, no....  I hate taking these pills every night, hate having to be sure that I have something to eat with them, if I'm out and about at 9:30 in the evening, hate that I'm still scared to death on the rare occasions that I have sex with my (negative) partner -- no, this is not normal to how I was living a year ago.  It is, however, my "normal" now........ 
OK -- now I can go to work without having these thoughts in my head all day.  Thanks to all who share here -- it is so wonderful to read how others live with this virus and see that my "crazy" thoughts, aren't so crazy (or unique) after all.
Hugs!

[penguin]

Normality though, it is subjective?  a difficult concept for the stats people, one that doesn’t fit so well into bar charts and percentages + power point presentations. impossible, too, to compile a research document which emcompasses everyone's experience of life with this virus..

The getting you, or me, or anyone with hiv, to their 75th birthday party, that is the measurable thing. Harder to quantify, the diarrhea that made you an hour late arriving, or the presents you couldn’t open cos of your neuropathy, or the birthday cake you chucked up in the shrubbery (or couldn’t eat in the first place, cos of your sky high cholestorol)

No, I’m not normal, whatever that means. HIV aside, I like marmite sandwiches and  obscure digital radio stations.
I am still here though, me + my multicoloured pills and whatever combination of side effects they give me, and that is, for the measurers, the tangible bit, and the point of this research?

Kate

[ONYXATL]

Yes, I truly understand and appreciate where you are coming from..unless someone is PWA or PWH, they do not know what it is like on a day-to-day basis...Hope you are feeling better...I am getting ready from the tropical storm down here in Florida...Have a nice safe and quiet weekend..Onyxatl

[bobik]

Hey Moffie,

I understand you completely.
Love you, man, hope to be able to hug you one day in real life!

Coen

[rosskie]

Who the hell wants to be 'normal'?  I'm much better than normal, and wasn't normal before I was HIV +.
 
G    ABC     D EEE GECC       
The ABC’s of HIV Rx’s  by K. Ross Thomas

C  D   D    EEE   F  G      EG     C   E  FG
If you think HIV is fun, normal, or not complex
G   F    E    D    CC     C   F    ED        C E  GECC
Let me tell you about the side effects of the Rx’s
   GFED                FED (repeat)
Chorus:  You don’t want the side effects
Can’t live with the side effects.
CCC D   EF           G     GG         CE      CEFG    CG
AZT can suppress bone marrow causing anemia, I know
CCC,DDD,EEE,FFF,CE   CDEFG      CG
ddI, ddC, d4T, 3TC, acute pancreatitis, I know
CCC,DDD,EEE,FFF      CDEF     CDEF          CG
ddI, ddC, d4T, 3TC, peripheral neuropathy, I know
CDEF,    DDD, FFF,  CE      CDEF     CG
acyclovir, TDF, IND, kidney toxicity, I know
EEE DE      FG         F      G     CG     CG
EVF almost always drives you crazy, I know
CCC  D  E F   GFE     D EFG       D         EFG         CG
T20 is a pain in the ass, or wherever you inject it, I’ve heard
GFED                FED (repeat)
Chorus:  You don’t want the side effects
Can’t live with the side effects.

C       DDDD  E     F       CE    CDE         CG
Most NRTI’s can cause lactic acidois, I’ve heard
CCCC, DDDDD.  EE     CE      CDEF   CG
NRTI’s, NNRTI’s, PI’s, liver toxicity, I know
AAA,BBB,CCC. DDD  EEE   FFF GGG AAA
ABC, APV, ATZ, DLV, EFV, FPV, NVP, TVP
C       D     EFG          CG         CG
Can cause dangerous rashes, I’ve heard,
CCC  D   EE    F    G       C   DEFG     CG
ddI, most PI’s can cause bad diarrhea, I know,
CCC D   E     F      EG       C   E   CEG
ddI can warp your vision, as can Viagra.
   CEG    CFA    CGB
Chorus: Viagra!  Viagra! Viagra!
C  DD   E        F   C  D    E  F     CG     GECC
What’s even more fun is that if you combine Rx’s,
  C    E     F      CEG        F    ED
With the same potential side effects,
C          DE        E   E  F     G      CG
You’re almost sure to get them, I know.
C     D GECC C D   E   F   G   CEG        FED
All the Rx’s have a long list of potential side effects,
CG        C      D    E F      G  FE
I know, I’ve had almost all of them.
GFED                FED (repeat)
Chorus:  You don’t want the side effects
Can’t live with the side effects.

C     DDDD  E    FFF  C     E      GEFG CGEC
Plus SSRI’s and RTV are strong P450 inhibitors,
CC         D    E   EFG       E   F   EFG   EG      E  FF  GECC
Causing you to overdose on the usual dosage of other Rx’s.
C      E         FE   D   C   G     F    G     C
But what’s extra fun is what we don’t know
C      EEE GECC CD E     F           CG        GFE      FD
Most HIV Rx’s never go through long-term clinical trials
C       CEDF                EG           C      DE  F      GG   GAB
Most combinations, cocktails, have never been tested together,
EE       D  C
Except in us.
C         D   GE       F
We’re the guinea pigs,
DC   D    E          F  DF   C  GE    F
So if you don’t want to be a guinea pig
C   D    FED           C EEE GECC
for the side effects of HIV Rx’s
CC       DD         E    DF       G
Avoid catching the purple plague.
GFED                FED (repeat)
Chorus:  You don’t want the side effects
Can’t live with the side effects.

[JLPinFTL]

I agree with blondbeauty.  we're in a whole lot better situation then 20 or 10 years ago.  sure it sucks to have all the side-effects but we're still alive...   

I don't like people implying the war against AIDS is over when it's barely begun. 

But we're fortunate not to have been diagnosed 10 years ago!

[Tim H]

Let's see:  I spent eight years being told I was going to die of an infection that was inevitably fatal, seven years on an early clinical trial where my doctors were guardedly optimistic, and the last seven years on a series of treatments that sequentially promised me some tentative extention of my lifespan.

A certain amount of fatalism has been inevitably bred into my bone at this point -- I suspect that the combination of long-term infection, a series of (decreasingly) toxic treatments and the onslaught of sexually transmitted diseases I experienced in the late 1970's and early 1980's will take their tolls eventually: I had a precancerous  anal wart removed last December, and might be able to hold out until there is an effective treatmentment for HPV or Anal Cancer.     

I suppose being told that I might have a normal lifespan is a lovely piece of headline rhetoric, but like much AIDS reporting, is unthinkingly cruel to those of us who live with this every day.  I know I am lucky to have the ability and the resources to live with this disease, but that doesn't make it easy.  Desperate for good news, I still have to remember that the virus will always stay with me.

 

[jmorti]

...for a newly diagnosed person, I NEED to hear that there is hope.  I NEED to know that maybe I'll be around to see a cure.

David

I couldn't agree with this statement more, David.  I'm only 2 weeks into my diagnosis and 2 weeks on meds...but to have the hope of living out life, even if it's with the side effects of my meds and knowing the obstacles I'll have to face, it helps me get through the day.  I am a funeral director and I deal with death on a daily basis, but when you're faced with your own mortality it scares the sh*t out of you.  My biggest fear is my mother having to attend my funeral.  I dread the day that I have to attend hers, but I'd much rather be the one going to hers, than her going to mine.  At this point, my goal is to outlive her...hopefully with the help of medications, healthy eating, and exercise I will live well beyond even that.

[bertbear]

hey guys,
I just read all the posts and agree with most all of what was said.

I saw my first friend covered with Kaposi's in 1982.He died soon after. Many of my friends committed suicide over the years til '95 and the birth of the protease era.That's when AIDS ended, right?
Of al my friends who tested poz when the initial testing became availabvle until '95, there are only three of us still living
I thank the universe I am one of those lucky ones, though I have about every side effect you can list from the HIV and antiretrovirals.
Neuropathy, lipos- distrophy and -atrophy, chronic sinusitis, heart attack,diabetes, buffalo hump, neck nodules etc. and more MRI's, Ct scans, Pt scans than I can count
My business went bankrupt in '98 during my AIDS year and I lived on welfare 'til medicare and medicaid kicked in 2 years later.
I had my first Sculptra injectios last night by way of a patient assistance program provided by Dermianfter living with a gargoyle face for 7 years.All (you bare chested, semi nude photo guys take note),
After all of that I would not trade one nanosecond of the life I have for the alternative.
August '98 52 t cells, vl in the multimillions
MAC, PCP, Thrush, heart attack.

August '06 VL- <50 (since reyataz  2 1/2 yrs ago)
t cells 726
 still alive and kicking !!!

[Moffie65]

I see there are a load of guys and gals posting in this thread for their very first time.  Some of you are newly diagnosed, and others like Bertbear, not so much.  From where I sit, I want to welcome each and every one of you to this fine place, and please feel free to start an introduction thread for us all to see.

If any of you want to read a story from one other old timer, my life story is contained right here in the Blogs, and it starts last August.  I haven't posted recently, due to my re-adjustment to Trizivir.  I said re-adjustment, simply because my body is highly allergic to AZT, and I almost died in '96 due to complications from this damn poison.  I had to start in June taking this drug, because my virus mutated into one that is only affected by AZT.  I am now adjusting better and have only waves of nausea, but they of course, always come on when I need them least. 

Anyway, welcome all you new guys, and please make yourselves comfortable, this is a neat family of folks and our motto is "It's OK, I understand, I'm HIV+ too". (please note, this was not the creation of the owners, but us who are registered here.

In Love and Suport.

[spock]

Life and quality of Life are two different concepts. I don't feel any of us have the same "quality" of life that we once had....but maybe that is a small price to pay for extension of time. I agree with the posters that the word "normal" is an inappropriate word to use for anyone with HIV/AIDS. Lymphoma, radiation galore, chemo galore, side effects galore from the multitude of meds for other related conditions (not counting the HIV meds) all taking thier daily toll as well as keeping me living........"normal?"......I don't think so.
We have to get this current Congress changed on November 7th so we can make sure the current President and his gang in both Houses do not let the HHS report become reality.

[newt]

I feel normal (sorry, perhaps) - matt

[Pozjoenrancho]

I'm confused as to who's definition of "normal" you are using.

If "normal" is a man that works hard and plays just as hard both sexually and not, can afford his life style with a $36,000 gross a year job, the only drugs that he takes is Tylenol and antibiotics, breaks out in a cold sweat at the thought of a flu shot, can feel the difference between a peach and sand paper, gets a good night's sleep, has routine rest room habits, and may live a enjoyable life to a ripe age of 101. Then no, I.m not "normal" but I was.

If "normal" is a man who can no longer work And can't afford to play on his 12,900 net SSD a year, when he tells a potential sex partner he has A.I.D.S. has sex alone, who can count people (other than biological family) that are willing to visit with him on one hand, the remaining people seem to fear the air that he breaths, Takes as much drugs as his 66 year old parents and has to include jell tabs of THC for nausea and vomiting and whenthe jell tabs don't work uses inhaled THC (legal in California for medicinal purpose) because he cant stick himself with a needle yet and can't keep a suppository in long enough to dissolve, has had blood drawn so much that he has scar tissue and can draw blood on others with the best lab tech, who's hands and feet are numb 99% of the time, has not slept more than two hours in years with out a sleep aid (because of fear of dependency sleeps every third night), who's rest room habits include alternating between a cork and TNT as an aid, and may live a miserable life to a ripe old age of 101.  Then yes, I'm living a "normal" life.

Joe

PS Tell me. Why do I bother?

[blondbeauty]

I also feel normal Matt...and I trust what Drs say about HIV today.

[newt]

I do not wish to set my experience (nb: MY experience) against others, or say it's comparable or the rule even, esp. people in the throes of getting round a new HIV diagnosis, or having a shit time, probs with access to meds etc.  But right now, right here I do feel normal, and have a normal quality of life for my age n income. Living in England helps.

I had a long talk with my ex about "normal".  He said: even though intellectually he KNOWS he's okay emotionally he FEELS (well FELT) "unviable" because of HIV, like did he have a future? what would happen etc? I was a realisation, precipitated by falling for someone, that overall  (in his EXACT words) "HIV is not that important" that kicked him into thinking he was, er, viable. One thing he said which improved his life was stopping reading news about HIV/HIV meds.

I concede the occasional crap mornings to Norvir nausea.  I DO concede this. I even concede this isn't "normal".   But (1) people without HIV have non-normal mornings (2) I still FEEL normal. even when my stomach's churning.  I feel, hmm, legitimate as a person. Yes, that's it.

Like I said here a while back (this explains why and when).

I am sorry if this upsets anyone who's having a shit time or disgees with me. Truly.  But I reckon more people feel like me than care to say (perhaps out of respect, eh?).

- matt

Now playing: Suede, Saturday Night

[jkinatl2]

I totally understand how some people might need to only hear the most optimistic and positive (no pun intended) side of HIV treatment and prognosis. But I also understand that this desire is motivated out of fear, with potentially dangerous results.

Someone might want so badly to hear only the good stuff that they do not research (or they dismiss) the side effects, long and short term, of the meds they might be taking. They are the ones I personally worry about, because they are the ones who do not recognize a rash for SJS, or serious drug allergy. They are the ones who, having been dismissive of the experiences of others, are perplexed when long term CNS effects of Sustiva manifest themselves.

They are the ones more likely to die, ironically. Because they were too afraid to view their illness and it's treatment in it's full reality.

But in the meantime, they are the folks who casually, even defensively, dismiss the experiences of others as outdated and antiquated. They are the ones who demean HIV activism and research because it makes them uncomfortable. They are the ones who simply wil not hear of the pandemic past the drug company rhetoric, or the well-meaning but ill-considered pandering by physicians who have little interest in research or science.

And of course, on the opposite end of the spectrum are people who are so entrenched with their illness, who have spent decades defined by it, who reject out of hand any optimistic or positive news. Because so many times, such messages have been proven disasterously wrong. And moreover, it serves to further isolate people with a wealth of experience and wisdom as regards HIV. It implies, when it does not state outright, that they have nothing to add to the current conversation, and that their experiences are of historical, not practical value.

Any decision based on fear is likely to have serious negative consequences.

Me, I am a skeptic. I need to see the data, and even then, need to make sure it's quantifiable and repeatable. And frankly, we do not have data in that states for a certainty that we have a normal life span. What we have are projections, some perfectly valid, based on the data gathered thus far. But "thus far" is only a normal life span if you are a golden retriever. A human's life span is roughly seventy-odd years. So when this report comes back in, say, 2030, I will pay far closer attention.

In the meantime, it's not about a promise of a future. It's about making today count. It's not about squeaking by those precious extra seconds of life, but about the quanity of those moments.

And any moment we give over to fear is, in my opinion, wasted time.

[Life]

This topic brings alot of people out to register to make their message and concerns heard.. 4 new Members, Wow..  Welcome to the forums...

[blondbeauty]

This is what Dr. Gatell says about HIV today.

http://www.abc.es/20060813/sociedad-sanidad/sida-solo-falta-vacuna_200608130247.html

Ill translate one of his answers:

- we do not know if the treatments that we are using will show to be toxic in the next 15 or 20 years. It is better not to become infected than relying too much on meds.

http://actualidad.terra.es/sociedad/articulo/generalitat_sida_creara_institutos_investigacion_1049411.htm

[alive2]

 i want to reflect what i feel is normal,normal to me is waking up feeling like crap,sick in my stomach,not sleeping well,its normal for us to feel this way,normal is only relitive to how i felt the day before,so yes we are all normal here.it is the people who arent afflicted by this disease who arent normal.i still run every day,to the bathroom,exercise.drive sure i drive my freinds nutty.walking yes as soon as im done with the running.
if you were born blind, and you dont have a perception of colors but were told they are there,is no different than us,we know what health is we just dont get to experience it often if at all,but does that mean it dosent exsist?so yes i feel normal i still use my hands,the term in the sence of life is relitive to the previous day, be it good or bad,if we suffer then its normal to wake up expecting to feel like crap,but if we wake in the morning and feel good then i call that an exceptional day,not abnormal.im still married(thanks to eric,he helped me alot to see the light of day)and my wife still gripes at me thats normal,she has all along ,so yes i feel normal to the sence i still have air in my lungs,at least when im not inhaling,yes i inhale.the only things different are pills,and the approach i take to daily life,im sober,eat well,and exercise by running(just to the can).whos to say were the abnormal ones?were different i agree there but never abnormal.take care

[Eldon]

Juan, Here is a translation of the article you posted:

Ten years later of which Vancouver presented/displayed al world the medication that the life to the infected ones by the VIH gave back, the virus del AIDS, Canada returns to raise the flag of the fight against the pandemic.

The investigator of Clinical of Barcelona Jose Maria Gatell does not wait for great scientific advances of this encounter. "the present therapies are already effective almost to the one hundred percent", affirms. But it is left much to make in prevention and solidarity. - It is possible to wait for of this encounter something as revolutionary as what it was lived in Vancouver in 1996? - No. When you are at the beginning of a disease and there is almost nothing no to fight it, you can give a great jump and happen almost from 0% to the 100%.

The things are very outposts in the field of the treatment. The only great advance that could occur in the world of AIDS is that it appeared a vaccine, but that is not going to happen in Toronto. - Twenty-five years after the first case, AIDS adds 40 million of infected and 25 million deads. He is not paradoxical after the experienced advances? - we have advanced in the treatment, but not in the prevention.

The prevention requires a vaccine or a change of conduct. Nothing of that has been obtained. - It is possible to give antirretroviral therapy to all the infected ones with the important thing that it is to fulfill the therapy? - Until the conference of Barcelona of 2002 one thought that the treatment was so complex that in the developing world he was not feasible. Barcelona changed that thought. - In what sense? - We saw two things. One, that the two arms in which it must lean the fight against AIDS are the prevention and the treatment.

Second it is that if a minimum of sanitary infrastructure is had medicines and, the results are so good in Nigeria as in Barcelona. - It is possible to stop the pandemic? - To stop the pandemic is only possible with the prevention. In the history of the infectious diseases it has been only managed to stop an epidemic when it has been had an effective vaccine. Think about that the only diseases that have been eradicated, or almost, have been the smallpox, the poliomielitis and the measles. If there is no a vaccine, people will continue becoming infected. - Toronto is celebrated under the motto "Is time to fulfill". Lack international commitment? - the situation has improved.

The political, social and economic commitment is greater of the one than we had ten years ago, although you gave to much of which would be desirable. Said this, also it is certain that that commitment not only has to arrive from the rich world, but also of the developing countries. - Help in something the messages in favor of sexual abstinence? - If there are no sexual relations, there will be diseases of sexual no transmission. But to base the strategy against a disease like AIDS on a recommendation that is not realistic, does not contribute to improve the situation. - the Spanish young people more and more use the postcoital pill like contraceptive, which exposes to them to infections. - the only weapon of effective protection which we know against the diseases of sexual transmission is the preservative and is necessary to leave it clear. - is had lost the fear to AIDS? - the preventive measures against AIDS do not please in certain sectors of population, that try to diminish the problem.

They say that AIDS is a chronic disease, that has a simple treatment and that if you infect to you, will already treat to you. This is necessary to clarify it. - Aclárelo. - we do not know if the treatments that we used are very toxic to the 15 or 20 years. It is not necessary to trust the medication, but to try not to become infected. - will be known someday a vaccine with which pinchazo is enough to be prote'ge'? - There is virus with certain similarities to the one of AIDS for which we have effective vaccines; but there are others, like the one of herpes simple, as opposed to which we took to years looking for an antidote without success. It is not possible to be discarded that we fail in the mid term. - It works in a therapeutic vaccine that can control the disease without medication. He is this more feasible? - a substance that is a good therapeutic vaccine can end up vice versa becoming a preventive vaccine and. Both persecute that the immune system controls the infection.