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Author Topic: Who Still Dies from AIDS?  (Read 7193 times)

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Offline northernguy

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Who Still Dies from AIDS?
« on: July 22, 2007, 08:21:41 PM »
One of the stats I keep coming across is that HAART reduced the death toll from AIDS by 80%.  Great, but 20% still seems like an awful lot of people to me!  I think the stats were from North America, and perhaps right after the intro of HAART.  Are they still valid, or has it improved?

And if it is still 20%, why is this and who is dying?  Is it a specific group having trouble with adherence?  There was an article in the paper here quoting my doc, that he had a patient die who had been poz for 10 years and adherent, but just ran out of treatment options. Appreciate everyone's thoughts, especially those who work in the field.
« Last Edit: July 23, 2007, 11:31:15 AM by northernguy »
Apr 28/06 cd4 600 vl 10,600 cd% 25
Nov 8/09 cd4 510 vl 49,5000 cd% 16
Jan 16/10 cd4 660 vl 54,309 cd% 16
Feb 17/10 Started Atripla
Mar 7/10 cd4 710 vl 1,076 cd% 21
Apr 18/10 cd4 920 vl 268 cd% 28
Jun 19/10 cd4 450 vl 60 cd% 25
Aug 15/10 cd4 680 vl 205 cd% 27
Apr 3/11 cd4 780 vl <40 cd% 30
Jul 17/11 cd4 960 vl <40 cd%33
April 15/12 cd4 1,010 vl <40 cd% 39
April 20/12 Switched to Viramune + Truvada
Aug 2/12 cd4 1040, vl <40, cd% 38
Oct 19 cd4 1,110 vl <40 cd% 41

Offline Iggy

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Re: Who Is Still Dying of AIDS?
« Reply #1 on: July 22, 2007, 08:29:30 PM »
Not everyone on HAART does well and not all people can withstand the side effects.

I am unsure the 20% figure as being still accurate as to todays date, but I do know that people do in fact still die from AIDS today.


Offline Blixer

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Re: Who Is Still Dying of AIDS?
« Reply #2 on: July 22, 2007, 09:32:23 PM »
I think there are probably a variety of reasons.  One main reason is that some individuals simply choose to stop meds.  Right after my diagnosis I met a guy from the poz.com site who lived close to where I lived.  His virus was under control and he was doing pretty good.  But he just decided he didn't want to take the meds any more.  So he stopped. He didn't discuss it with his doctor.  He didn't tell anyone.  He just stopped.  And the last I knew his numbers were not good.

And then there are those who possibly receive questionable treatment.  I have another acquaintance who was undetectable for years.  He started with a t count in the 40s and has never been above 200 in 12 years of treatment.  (of course, starting at 40 is a low place to start).  His doctor told him that his problem was stress and that he should quit his job (which he did).  Anyway, he tells me that he has never had a resistance test even though is VL suddenly increased.  His doctor put him on Atripla in Jan of this year "to go to the 'one pill a day."  Now his doctor wants to change meds again because he has started showing signs of resistance.  Yet, no resistance test was done.  His current VL is 30,000 he tells me.  My friend really never checks out his treatment options.. he just listens to his doctor.  That can be admirable, but I think we still live in an era where we need to be proactive and know what our own options are.  So my point is that I think sometimes people just blindly go along, sometimes getting marginal advice, until they get into a situation where they have lost options or where too much damage has been done.

Of course, there are those that just can't tolerate the treatment and there are numerous other factors that come into play too.  Yes, people do still die from AIDS in the US.  Some of them may have started treatment years ago.  Some may not have taken care of themselves.  Some may just be unlucky.  But it seems to me that those of us starting treatment today, if we are proactive and knowledgeable about this disease and our options, should be able to look forward to a fairly normal lifespan.  That seems to be the consensus of many leading HIV doctors today. 
David
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline otherplaces

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Re: Who Is Still Dying of AIDS?
« Reply #3 on: July 22, 2007, 11:04:36 PM »

Considering 1/4 of the HIV+ population in the US hasn't a clue they're positive.  I would imagine they die from PCP right after finding out they're positive...and never have a chance to get treated.

I can't give you a statistic, but I know I've read that the death rate among HIV+ people on HAART is near to the 'normal' death rate. 

Offline StrongGuy

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Re: Who Is Still Dying of AIDS?
« Reply #4 on: July 23, 2007, 12:22:54 AM »
This is an interesting question in terms of countries where treatment is accessible. Since I've been diagnosed, I've seen one friend die and he had been through a rough time with resistance and meds and just died in his sleep suddenly and no one really knows what the specific cause was. His family wasn't all that forthcoming.

This is definitely something I'm going to bring up to my doc and see what he says based on all the patients he sees. It's also probably a good question for the "Ask the Experts" section at The Body in terms of their experience or studies they may know of that provides solid data.

"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

Offline md

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Re: Who Is Still Dying of AIDS?
« Reply #5 on: July 23, 2007, 04:15:24 AM »
I can't give you a statistic, but I know I've read that the death rate among HIV+ people on HAART is near to the 'normal' death rate. 

Many years ago a doctor pointed out to me that the 'normal' death rate is fixed ... it is, as he said, "one per person".

Offline Cliff

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Re: Who Is Still Dying of AIDS?
« Reply #6 on: July 23, 2007, 07:51:00 AM »
I thought the deaths were primarily related to:

1.  People who find out their status too late.
2.  People who die of other HIV related diseases (like liver/kidney failures, heart disease, etc.)
3.  People who can not tolerate ARV's or run out of options


Offline redhotmuslbear

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Re: Who Is Still Dying of AIDS?
« Reply #7 on: July 23, 2007, 08:29:45 AM »
Don't forget people who die of metabolic complications from meds, like arterial disease from high cholesterol due to protease inhibitors or renal failure from other meds.
"The real problem is not whether machines think but whether men do." - BF Skinner
12-31-09   222wks VL  2430 CD4 690 (37%)
09-30-09   208wks VL  2050  CD4 925 (42%)
06-25-08   143wks VL  1359  CD4 668 (32%)  CD8 885
02-11-08   123wks off meds:  VL 1364 CD4 892(40%/0.99 ratio)
10-19-07   112wks off meds:   VL 292  CD4 857(37%/0.85 ratio)

One copy of delta-32 for f*****d up CCR5 receptors, and an HLA B44+ allele for "CD8-mediated immunity"... beteer than winning Powerball, almost!

Offline dad1216

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Re: Who Is Still Dying of AIDS?
« Reply #8 on: July 23, 2007, 08:59:25 AM »
I am dying of AIDS....
I ran out of treatment options, can't tolerate the side affects of the meds, and lack of healthcare.
In 9 days I will hit the 1 year mark of letting nature take its course.
Prior to all this I was adherent, proactive about my health, and then the bottom fell out.
I must just be one of the unlucky ones...
23 years HIV+ (Oct 88)
11 years AIDS (March 00)

CD4=83  VL=47,000  (May 2011)
CD4=63  VL=78,470  (Oct 2010)
Prezista..Norvir..Truvada

Offline RapidRod

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Re: Who Is Still Dying of AIDS?
« Reply #9 on: July 23, 2007, 09:10:12 AM »
Don't forget people who die of metabolic complications from meds, like arterial disease from high cholesterol due to protease inhibitors or renal failure from other meds.

People die every day of metabolic complications, arterial disease and renal failure. I don't believe AIDS has any specific diseases to die from.  Death has always been one of life's guarantees. It's what you make of your life between birth and death that counts.

Offline Peter6836

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Re: Who Is Still Dying of AIDS?
« Reply #10 on: July 23, 2007, 09:29:17 AM »
I agree with Rod. We will all die. Does it matter of what. All that matters is how we deal with life, from the beginning to the end. As I understand it AIDS, and HIV effect all differently. A comprimised immune system may increase our chance of death. What people say the reason for the death is does not matter in the scheme of things. I am sure people are dying of AIDS, I know people are sick and dying from AIDS I see them all the time.
I say enjoy the day live for the moment. Search out joy!!!!!! Find your Bliss daily!!!! Do not focus on the inevitable, all we need to do is accept it as a fact.
Peter

Offline Maestro

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Re: Who Is Still Dying of AIDS?
« Reply #11 on: July 23, 2007, 10:06:42 AM »
People die every day of metabolic complications, arterial disease and renal failure. I don't believe AIDS has any specific diseases to die from.  Death has always been one of life's guarantees. It's what you make of your life between birth and death that counts.

That is true, but my Uncle nearly died from renal failure brought on by his Viread. Had he not had HIV, he would not have been on Viread and likely would not have had renal failure...Had he not stopped taking the Viread, he would have been dead.



Offline GSOgymrat

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Re: Who Is Still Dying of AIDS?
« Reply #12 on: July 23, 2007, 10:33:45 AM »
I wonder if someone with AIDS dies from car crash, homocide, etc. if they are included in that statisic. What about if they commit suicide? AIDS may or may not have been the cause. Determining who on HAART died of AIDS related causes might not be so easy.

Offline zeb

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Re: Who Still Dies from AIDS?
« Reply #13 on: July 23, 2007, 12:07:32 PM »
well i found something on thebody.com from Keith Henry (an HIV doc)

http://www.thebody.com/Forums/AIDS/SideEffects/Q184618.html

"In my opinion, the current goal of HIV therapy is to achieved a normal life expectancy (not shortened by HIV infection) and have a full and enjoyable life. Recent estimates of the "average" life expectancy of HIV+ persons with access to good treatment have been as much as 34 years (US study) and up to 40 years (European study).

There is a wide range of clinical outcomes, but increasingly the major threats to health/life for HIV+ persons are non-AIDS related (heart disease/cancer/liver. kidney) that may still be impacted by HIV infection. The overall negative impact of HIV on health seems to be diminished when the CD4 count is regularly more than 500. Thanks for sharing your story with the readers here. KH "

So still folks die of AIDS. For several reasons I guess.
But things seem to get better for those on HAART.

Zeb

Offline Christine

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Re: Who Still Dies from AIDS?
« Reply #14 on: July 23, 2007, 01:09:50 PM »
I don't have any statistics for you, other than my experiences. Diagnosed in '93, infected in '92. Very fortunate to have access to excellent health care, medications, doctors, hospitals, family support, psychological support.

Adherent to all my meds, ate well, exercised, don't smoke, don't drink, don't do illegal drugs...did everything that is recommended to do in order to live a 'normal life expectancy'.

After all this, the drugs failed me. I am resistant to every drug, except Viread. I no longer qualify for any current clinical trials because my vl is to high, and the tcells are to low.

I am dying of AIDS. I will die of AIDS. People do every day. In my opinion, people will still be dying of AIDS for years to come.

Why hiv is reported to be a manageable disease is a disgrace to me. People still suffer each day, die each day from it. I believe a more practical approach would be to teach people to value what life they have left, appreciate what they have been given, and to love those around you for what ever time you have left with them.

Sorry about the rant...I am feeling a little down today. Still having pain and cramps after two vicodan, and a morning spent on the toilette, my manageable disease is winning today.

Christine

edited for typo
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline Iggy

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Re: Who Still Dies from AIDS?
« Reply #15 on: July 23, 2007, 01:24:28 PM »
Christine - please don't you apologize for your "rant"  On the contrary - I'm sorry you feel that even on this board you have to explain your reality to others.

I hope your post answers some of the questions and doubts already voiced.

Modified: I also want to thank dad1216 for his post as well - I'm sorry that I didn't mention you above.
« Last Edit: July 23, 2007, 03:28:20 PM by Iggy »

Offline Dachshund

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Re: Who Still Dies from AIDS?
« Reply #16 on: July 23, 2007, 01:57:48 PM »
Everytime I tried to read this thread I had to stop Christine because I could only think of you. I couldn't read this thread because I keep thinking about my friend Chuck who died of aids three weeks ago. I recognize the names of the posters and shake my head in wonder. Do they not know you? Have they paid no attention to you? Not one word, not one mention, of our beautiful Christine who has bravely and eloquently and honestly documented her battle with aids. I wish I had your bravery and could have pointed out to those who should know better that yes people still die from aids...my friend Chuck...and yes people are still dying from aids...my friend Christine. I love you.

Hal

Offline Blixer

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Re: Who Still Dies from AIDS?
« Reply #17 on: July 23, 2007, 02:08:29 PM »

Why hiv is reported to be a manageable disease is a disgrace to me. People still suffer each day, die each day from it. I believe a more practical approach would be to teach people to value what life they have left, appreciate what they have been given, and to love those around you for what ever time you have left with them.

Sorry about the rant...I am feeling a little down today. Still having pain and cramps after two vicodan, and a morning spent on the toilette, my manageable disease is winning today.


Christine,
Thanks so much for your brave post and such a superb insight.  We all need to learn to value the life we have and love those around us.  The fact is that we can't predict what our lot is in life.  We are only assured the moment.  Lots of things happen that may not make sense, may not seem fair, and may not even be right.  But they happen.

As has already been said there should be no reason to apologize for your words or comments.  As with many others, my thoughts go out to you.  Each one of us can only do the best we can do.  Statistics don't really mean much when it comes down to the individual.
David
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline David_CA

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Re: Who Still Dies from AIDS?
« Reply #18 on: July 23, 2007, 02:30:27 PM »
II am dying of AIDS. I will die of AIDS. People do every day. In my opinion, people will still be dying of AIDS for years to come...
 
Sorry about the rant...I am feeling a little down today. Still having pain and cramps after two vicodan, and a morning spent on the toilette, my manageable disease is winning today.


Christine,

I'll add to the others that say there's no apology needed.  In fact, you (and a couple others) give many of us what we need to hear - a reality check.  What's happened to you, in terms of HIV/AIDS, could easily happen to any of us.  To be able to get that through with such clarity is greatly appreciated.  Thank you.

David
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline englishgirl

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Re: Who Still Dies from AIDS?
« Reply #19 on: July 23, 2007, 02:40:04 PM »
christine - im glad you 'ranted', except i dont think you did, i just think you told your reality, and for that i thank and applaud you.

obviously people both poz and neg like to think that aids doesnt exist in the first world any more and meds have solved everything, but as dear wise moffie often used to remind us that is absolute bollocks.

i know it's important to recognise the progress that has been made in the last 25 years of this disease, but there is still a long way to go. i dont want to scare any newbies who read this, cos the general prognosis is indeed much better now than it used to be, but i dont think we will achieve anything by pretending that none of us have a possible death from something aids-related sometime in our future.

being positive about being poz is about making the best of what cards you are dealt, not by pretending that we will all tootle along with 100% health until dying peacefully and painlessly of a heart attack in our sleep aged about 90 years old.

christine you continue to be an inspiration to me
blixer, hal, david - you said it all

with much love to everyone
xxxx
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"I'm not keen on the idea of the afterlife - not without knowing who else will be there and what the entertainment will be. Personally I'd rather just take a rest." Oscar Berger, PWA: Looking AIDS in the Face, 1996. RIP.

Offline sweetasmeli

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Re: Who Still Dies from AIDS?
« Reply #20 on: July 23, 2007, 02:52:19 PM »
Quote
Who Still Dies from AIDS?

My friends, that's who. So fuck statistics. I won't write any more on this topic.

Melia
/\___/\       /\__/\
(=' . '=)    (=' . '=)
(,,,_ ,,,)/   (,,,_ ,,,)/ Cats rule!

The difference between cats and dogs is that dogs come when called, whereas cats take a message and get back to you.

Yeia kai hara (health and happiness) to everyone!

Offline RICKY77531

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Re: Who Still Dies from AIDS?
« Reply #21 on: July 23, 2007, 07:46:59 PM »
Quote
obviously people both poz and neg like to think that aids doesnt exist in the first world any more and meds have solved everything, but as dear wise moffie often used to remind us that is absolute bollocks.

I used to think that way, would party hard ,unsafe sex..until I got a pcp, then tested, postive May 07, that was my reality, realized to live life day by day,be thankful for what I have...christine...dad1216...you are an inspiration , your voices alone I wish I could of listened to when I was so stupid back then maybe it would be different..maybe I wouldn't have the attiude that it wouldn't happen to me!! ;. yes..people die from aids...is it me?...don't know...if it is me, going to die fighting and smiling...  ;D
06/2007   CD4 266  Vl 62000
06/2007   CD4 200  Vl 13495
07/2007   ATRIPLA
09/2007   CD4 323  VL Undetectable
11/2007   CD4 428  VL Undetectable
01/2008   CD4 357  VL Undetectable
04/2008   CD4 357  VL UNDETECTABLE
08/2008   CD4 402  VL UNDETECTABLE
11/2008   CD4 421  79 DETECTABLE..
2/2009     CD4 450  VL UNDETECTABLE

Offline rkeat25

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Re: Who Still Dies from AIDS?
« Reply #22 on: July 23, 2007, 09:39:50 PM »
Let us not forget those who die on waiting lists. 

~ronnie

Offline DavidinCA92284

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Re: Who Is Still Dying of AIDS?
« Reply #23 on: July 23, 2007, 10:02:32 PM »
I agree with Rod. We will all die. Does it matter of what. All that matters is how we deal with life, from the beginning to the end. As I understand it AIDS, and HIV effect all differently. A comprimised immune system may increase our chance of death. What people say the reason for the death is does not matter in the scheme of things. I am sure people are dying of AIDS, I know people are sick and dying from AIDS I see them all the time.
I say enjoy the day live for the moment. Search out joy!!!!!! Find your Bliss daily!!!! Do not focus on the inevitable, all we need to do is accept it as a fact.
Peter

Well, I totally disagree with you and Rod on this point.  It does matter what we die from because if the death from the dis-ease is preventable or treatable then we could live longer.   The issue is that HIV does not necessary cause death and being diagnosed with AIDS does not cause death, but the compromised immune system allows the body to develop illnesses otherwise kept in check by the body, and therefore we die from those certain things gone wild in the body.  Those certain things, obviously brought about by having AIDS in the first place are the things to worry and be concerned about.   I intend to live day by day, but I'm not going to live with my head in the sand assuming that because I will die eventually that it doesn't matter what from.   

Online Miss Philicia

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Re: Who Still Dies from AIDS?
« Reply #24 on: July 23, 2007, 10:05:28 PM »
I am dying of AIDS. I will die of AIDS. People do every day. In my opinion, people will still be dying of AIDS for years to come.

Why hiv is reported to be a manageable disease is a disgrace to me. People still suffer each day, die each day from it. I believe a more practical approach would be to teach people to value what life they have left, appreciate what they have been given, and to love those around you for what ever time you have left with them.

Quite true, Christine.  While things (excepting your situation at the moment) are not as dire as they were a decade ago they still are NOT peaches and cream like everyone here seems to want desperately to believe.  Hell, half of the posters think a vaccine is seemingly right around the corner.  I understand the need to be optimistic but when dealing with a deadly disease I've found it much more valuable to have a more realistic approach.

As always, my thoughts are with you.
"Iíve slept with enough men to know that Iím not gay"

Offline milker

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Re: Who Still Dies from AIDS?
« Reply #25 on: July 23, 2007, 10:28:48 PM »
There were only 2.9 million people who died of AIDS in 2006 (http://www.avert.org/worldstats.htm)

I have no clue if I will be part of the 2008 or 2018 or 2028 statistic, but I would appreciate if the mainstream media stopped saying that aids is cured by just taking a pill a day. There have been 17000 people die of aids in the US in 2005 (http://www.avert.org/usastaty.htm).

Also: http://www.statehealthfacts.org/comparemaptable.jsp?ind=525&cat=11
And: 10% of californians with HIV died of Aids in 2005: http://www.statehealthfacts.org/comparemaptable.jsp?ind=526&cat=11

It's easy to get the numbers. Why is the mainstream media just talking about protection and showing people with bright smiles and hot bodies? Why is MTV not in hospitals interviewing AIDS victims, why did I have to get HIV+ to finally understand what is the daily regimen people go through, why did I have to get HIV+ to first hear about PN and other side effects? I thought I was well informed, I saw people die of AIDS in the 80s, and yet, I am learning every day reading the posts from people that have lived with this for years. I am a pretty educated person, gay, informed, and somehow I had no idea of what I'm going to go through.

Who knows that people like Christine are suffering ? That people like David are to get stung every day with a potent drug and can only hope that this is their "salvation"? That people can't handle this anymore, are thinking about suicide, are committing suicide, are  traveling miles away to fix their face or remove humps, are having unspeakable pain in their feet due to medication, have lost their love, their families, have lost everything because they have to pay $15000/year to get on meds? This is not on the list of side effects of HIV, and it should be.

Milker.
mid-dec: stupid ass
mid-jan: seroconversion
mid-feb: poz
mar 07: cd4 432 (35%) vl 54000
may 07: cd4 399 (28%) vl 27760
jul 07: cd4 403 (26%) vl 99241
oct 07: cd4 353 (24%) vl 29993
jan 08: cd4 332 (26%) vl 33308
mar 08: cd4 392 (23%) vl 75548
jun 08: cd4 325 (27%) vl 45880
oct 08: cd4 197 (20%) vl 154000 <== aids diagnosis
nov 2 08 start Atripla
nov 30 08: cd4 478 (23%) vl 1880 !!!!!!!!!!!!!!!!!!!!!!!!!!
feb 19 09: cd4 398 (24%) vl 430 getting there!
apr 23 09: cd4 604 (29%) vl 50 woohoo :D :D
jul 30 09: cd4 512 (29%) vl undetectable :D :D
may 27 10: cd4 655 (32%) vl undetectable :D :D

Now accepting applications from blowjob ninjasô

Offline JPinLA

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Re: Who Still Dies from AIDS?
« Reply #26 on: July 23, 2007, 11:08:57 PM »
Been reading this thread on and off since yesterday.  I appreciate the truth that Christine and dad have written.  I appreicate their candor and I send my love and admiration their way.

Indeed I am newly diagnosed and have unabashed cautious optimism for better treatments, however to think that people do not still die from AIDS is absurd to me.  Last year I watched my uncle die from AIDS related diseases.  He had access to excellent medical care for many years, ran out of treatment options and there you are.

I may very well be headed in that direction some day, I don't know.  I do know that I choose a positive but realistic outlook and am trying to live my life while I still have it. 

JP (Who is girding his loins for what is to come but is trying to have some fun while doing it..)
11/06 - Diagnosed - VL/5784 & CD4 326
2/07 - VL/6000 & CD4 290 2/07
3//07 -Began Truvada/Viramune 
4/07 VL/undetectable and CD4 320 22%
7/07 VL/undetectable and CD4 286 22%
11/07 VL/undetectable and CD4 302 26%

Offline StrongGuy

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Re: Who Still Dies from AIDS?
« Reply #27 on: July 23, 2007, 11:35:46 PM »
Christine my thoughts are with you and thank you for shring your unvarnished truth! Never apologize for sharing your reality!

Mike
(who didn't realize everyone here think HIV is peaches and cream and half the poster think a vaccine is right around the corner.)
"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

Offline northernguy

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Re: Who Still Dies from AIDS?
« Reply #28 on: July 23, 2007, 11:44:52 PM »
My friends, that's who. So fuck statistics. I won't write any more on this topic.

Melia

I hope I didn't make you angry :-[

The responses show me that the pat answers like "oh, its people who don't stay adherent that die" etc are not true.  dad1216 and christine, thanks for sharing your story...it makes me so angry that some of the new drugs are out there that might be able to help, but you can't get access to them.
Apr 28/06 cd4 600 vl 10,600 cd% 25
Nov 8/09 cd4 510 vl 49,5000 cd% 16
Jan 16/10 cd4 660 vl 54,309 cd% 16
Feb 17/10 Started Atripla
Mar 7/10 cd4 710 vl 1,076 cd% 21
Apr 18/10 cd4 920 vl 268 cd% 28
Jun 19/10 cd4 450 vl 60 cd% 25
Aug 15/10 cd4 680 vl 205 cd% 27
Apr 3/11 cd4 780 vl <40 cd% 30
Jul 17/11 cd4 960 vl <40 cd%33
April 15/12 cd4 1,010 vl <40 cd% 39
April 20/12 Switched to Viramune + Truvada
Aug 2/12 cd4 1040, vl <40, cd% 38
Oct 19 cd4 1,110 vl <40 cd% 41

Offline Carolann

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Re: Who Still Dies from AIDS?
« Reply #29 on: July 23, 2007, 11:52:47 PM »
Well,

My heart goes out to those of us who still suffer with this disease, and I have lost loved ones to this virus.

However it is easy to paint a picture of gloom and doom, for those newly diagnosed, even though I agree that we all should be aware of the unfavorable outcomes that can come our way.

On this board, the stories and experiences are diverse and inspiring. Some hold on with every shred of strength, while other have come back from eminent death. Still others started treatment before their bodies were too broken and are doing well. Philly has enviable numbers, as do others who had run out of options.

Though it is difficult for us at times to be optimistic, I find that it has helped me a great deal. I will remain so until I or my body chooses to let go. I have hope for better treatments to come, and will hope for them even if it is too late for me one day. For right now, I feel that like that Tammy Trainwreck, I will fight to the very end, regardless of how sooner or later it comes knocking at my door. That is my only way.

I don\\\'t think that anyone denies that people are still dying of AIDS, but people are dying in higher numbers of many other diseases in this country. We are more likely to die in an accident of some sort than of AIDS. Will HIV shorten our lifespans, perhaps, but a quicker way of shortening it is suicide, which is the 8th leading cause of death in males. Look up the leading causes of death in this country and it may surprise you. A bad diet, sedentary lifestyle,  stress, and vices are the biggest killers.

CA

Offline Iggy

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Re: Who Still Dies from AIDS?
« Reply #30 on: July 24, 2007, 12:05:34 AM »
However it is easy to paint a picture of gloom and doom...

Can we please stop labeling things as being of gloom and doom whenever anyone talks about the reality of death or dying or suffering from HIV and AIDS?

Granted suffering, pain and death aren't happy topics, but it seems to minimize the very people's experience you say your heart goes out to on a thread that specifically asked about who is still dying from AIDS.



Offline Carolann

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Re: Who Still Dies from AIDS?
« Reply #31 on: July 24, 2007, 12:18:49 AM »
It was not my intention Iggy, and believe me I have gone through my own share of suffering with this disease. Please do not try to turn my post into something that it is not. I am very sincere in my heart being with those of us that are suffering.

Lots needs to be done about HIV. It is a serious disease. We know people are dying. It is the 4th leading cause of death in places where people are not getting or seeking treatment.

All I wanted to say is that we should have hope. That is it. I have lost people to this disease too.

CA

Offline Iggy

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Re: Who Still Dies from AIDS?
« Reply #32 on: July 24, 2007, 12:22:51 AM »
Carolann,

I appreciate that and I should have been more broad in what I stated as your use of the phrase is far from the first I've seen it.  Though in truth I did feel riled seeing that phrase being used in this specific thread, but my apologies for making you feel that I question your intentions.

I think it is important to remember hope as well as to recognize that hope is a luxury some of us don't have. 

Iggy

Modified:  I just realized that I am not qualified to say who has or doesn't have hope - I meant more of a blind hope.
« Last Edit: July 24, 2007, 12:25:07 AM by Iggy »

Offline Dragonette

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    • NotPerfectAtAll
Re: Who Still Dies from AIDS?
« Reply #33 on: July 24, 2007, 08:04:28 AM »
Christine, thank you for sharing your story.

Wishing hoping & praying for you,

"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline SASA39

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Re: Who Still Dies from AIDS?
« Reply #34 on: July 24, 2007, 04:09:20 PM »
I`m back from Egypt.
For the 12 days I was feeling normally........
Then I have realized .............my soul is dying every day........little  piece by piece
Especially when I`m reading about my friends suffering.................
You know who you are , and I love you all..................................
               Al
Oct.     `06.  CD4=58  ?    %       VL not perform. ?!?
25.Dec.`06.         203       14        VL= 0
29.May.`07.    broken device        VL=1363
20.June`07     broken device        VL=0
25.Dec `07  CD4=582                  VL=70
14.May `08  CD4=448
29.July `08                                  VL=0
26.Nov `08  CD4=674                    VL=179
16.Mar `09  CD4=554                    VL=0
19.Jan`10 CD4=715               
03.Mar`10                                    VL=0
24.Aug`10 CD4=524                     VL=0
04.Dec`10 CD4=626                     VL=0
15.Sep`11                                   VL=93
17.Nov`11                                   VL=0
05/26 .Jul`12 CD4=713                 VL=0
28.Nov`12 CD4=916                     VL=0
09.May`13                                 VL=0

Offline pozattitude

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Re: Who Still Dies from AIDS?
« Reply #35 on: July 24, 2007, 04:41:00 PM »


I have no clue if I will be part of the 2008 or 2018 or 2028 statistic, but I would appreciate if the mainstream media stopped saying that aids is cured by just taking a pill a day. There have been 17000 people die of aids in the US in 2005 (http://www.avert.org/usastaty.htm).

Milker.

That is so very true.
I "love it" how the big pharma advertises their HIV drugs...hunky men having a great time looking all buff and happy....
I was just watching some reruns of Queer as Folk and it was the episode when Brian goes back to his old add firm and busts into a meeting with a big pharma rep.   They have the stud showing off his muscle, smiling and the phrase One Pill a day is so great!
Brian takes the picture down an puts up the ones he created with Justin...regular people like us and the caption on the pictures say.  I'm alive, but I throw up everyday.   The medicine is killing the HIV, but it is killing me too. 
No one talks about the side effects and what we have to live with.
My problem is that they make it sound so simple, the message comes across as " Who cares if you get HIV, take a pill, you'll be fine" or even to go further, with the looks of the people they chose to put on their adds, the message might as well be...Get HIV so you can take our meds and you too can look like this stud...

Rich
(who is hateful of many things today)
« Last Edit: July 24, 2007, 04:42:46 PM by pozattitude »
POSITIVE PEDALERS... We are a group of people living with HIV/AIDS, eliminating stigma through our positive public example.

Online Miss Philicia

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Re: Who Still Dies from AIDS?
« Reply #36 on: July 24, 2007, 06:24:38 PM »
I wonder why they don't use any lipoatrophy sufferers in those fab HIV med advertisements?
"Iíve slept with enough men to know that Iím not gay"

Offline RobT

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Re: Who Still Dies from AIDS?
« Reply #37 on: July 24, 2007, 06:49:52 PM »
I do not know of any1 who dies of AIDS. I am sure they r out there, but my doc said that ppl w/ HIV wud have a higher chance of dying in something totally unrelated than HIV.

Rob


Current meds: Atripla
VL: undetectable
CD4: 630

Offline bear60

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Re: Who Still Dies from AIDS?
« Reply #38 on: July 24, 2007, 07:04:42 PM »
Dont make me get out my list of friends who have died of AIDS....the list is at around 40 men now and I keep recording them ( although the years 95 to 98 did not have any entries)....the last entry was Dec, 2006.
Poz Bear Type in Philadelphia

Offline pozattitude

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Re: Who Still Dies from AIDS?
« Reply #39 on: July 24, 2007, 07:14:16 PM »
People do die because of AIDS complications everyday  :'(
We are lucky that majority of us are doing very well, we are lucky that we didn't get  infected prior to the mid 90's or that we survived the 80's with only AZT.  Yes, it is true that the drugs have allowed many of us to live pretty normal lives, but at what cost?
What will happen to us after say 20+ years of anti viral medication... we still don't know the long term effects of all these drugs.  Only 7 years on meds and my cholesterol is heart attack ready, I fell sick every day, my feet burn from PN, and I am one of the lucky ones.
What happens when the drugs don't work? Look at Christine's story.
By the way, Christine, you move me. My thoughts are with you.  Thank you for your courage and honesty!  I can only hope to be as brave as you are. You are a beautiful human being.

After 25 years, people are becoming complacent.  There is no cure for AIDS.
I have accepted this and I am prepared to die of AIDS and I don't say this with a sense of doom; but I don't want my life with HIV and the lives of all the people who have gone before me to be forgotten.  I want people to remember and take a stand against HIV/AIDS, to keepfighting this virus, to educate the young and the old, gay and straight.

My favorite AIDS campaign

WE ALL HAVE AIDS
...Kenneth Cole for AMFAR campaign

Rich
(who embraces his mortality and HIV)

POSITIVE PEDALERS... We are a group of people living with HIV/AIDS, eliminating stigma through our positive public example.

Offline Christine

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Re: Who Still Dies from AIDS?
« Reply #40 on: July 24, 2007, 07:49:37 PM »
I am not brave. Really, not at all. I just get up everyday, and deal with what happens each day. There will come a day when I don't get up again, and that is just the way it is. Some days I am okay with it, and sometimes I'm not.

This is just one of those weeks that I'm not okay with it.
Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline erasfred

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Re: Who Still Dies from AIDS?
« Reply #41 on: July 25, 2007, 05:29:25 AM »
I have to say that reading all of your posts today has made one thing clear to me.

We will all die wether it is from HIV/Aids or from some other cause. Butg I have to admit that I have not in the three and a half years of living with HIV had one freind dying from AIDS related illnesses. That is not to say that it will not happen. I know that in SOuth Africa due to the stigma still attached to this disease especially in the rural community's there are still thousands of people dying. from Aids.

This is something that is being slowly but surely turned around since the introduction of haart treatment from the provincial medical care facilities but we do still have a long way to go.

Fact is there are still people dying wether we want to accept it or not. Wether it is from not having access to treatment or wether it is from resistance to treatment.

Christine Thank you for making me especially aware of the possible consequences of waht MIGHT and note I say might lay in wait for me. this disease has made me aware and also from posts that I have already read on this forum that everybody is being affected differently by this but in the end one thing remains constant. WE ALL HAVE HIV/AIDS AND IT IS HOW WE DEAL WITH IT THAT MAKES THE DIFFERENCE.

Thankyou for letting me say my peace.

Rassie

Viral load : not detected
CD4        : from 347 to 459 july 2007

Offline DanielMark

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Re: Who Still Dies from AIDS?
« Reply #42 on: July 25, 2007, 06:26:36 AM »
Pending some mishap in this crazy world coming my way, I am more than likely to die of one of the many AIDS-related illnesses. Scanning the many possible Opportunistic Infections (listed on this AIDSmeds site) that could eventually kill me is both daunting and frankly too overwhelming for me to dwell on for very long. It would crush my spirit and do no good.

So far, my medications are keeping me alive, in combination with my living choices and the support I receive from loved ones. I can empathise with those who donít have access to meds or whose regimes are no longer working, but I learned long ago not to waste time on anything I cannot change Ė which is anything outside of me.

Christine, BIG HUG for you!

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline Bucko

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Re: Who Still Dies from AIDS?
« Reply #43 on: July 25, 2007, 02:26:48 PM »
The line between those living with and those dying with HIV/AIDS is razor thin. The tipping point is generally not recognized as such until it's already a little late.

Anyone who can't see that is either delusional or misinformed.

Brent
(Who knows that many suffer from the HIV-lite/Post-AIDS message)

Blessed with brains, talent and gorgeous tits.

The revolutionary smart set reads The Spin Cycle at least once every day.

Blathering on AIDSmeds since 2005, provocative from birth

Offline sharkdiver

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Re: Who Still Dies from AIDS?
« Reply #44 on: September 13, 2007, 01:56:49 AM »
my partner died of AIDS 2 1/2 years ago. He  survived 18 yrs, took every med available without missing one dose but they didn't work for him.

People die everyday here in the US, but it's seems that we don't see it, we don't really read about it or even talk about it much anymore. maybe its hidden by the sexy million dollar pharmaceutical adds or by the pornographers promoting ridiculously stupid "raw" sex.  Maybe its hidden with cutesy catch phrases like "cocktail"  because if one more negative person asks if I'm on a cocktail I'll scream. (probably because Id like a real cocktail   Bombay Saphire martini 4 olives please) I dunno maybe its just a rant. but I do feel much better.

shark

 


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