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Author Topic: B.C. researchers explore life expectancy among HIV-positive people  (Read 4669 times)

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Offline Delby

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According to a study conducted by the British Columbia Centre of Excellence for HIV/AIDS, life expectancy is hugely reduced compared to that of our HIV - peers. But yet we're told we should live a normal life expectancy.

The main findings are:

Results

During the course of the study, 21% of HIV-positive people died, as did 9% of HIV-negative people. This allowed researchers to calculate the life expectancy of people starting from age 20, as follows:

Men

HIV positive – 34 additional years of life, for a total life expectancy of 54 years
HIV negative – 61 additional years of life, for a total life expectancy of 81 years

Study:
http://www.catie.ca/en/catienews/2017-03-23/bc-researchers-explore-life-expectancy-among-hiv-positive-people

« Last Edit: April 01, 2017, 08:42:48 am by JimDublin »

Offline Jim Allen

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B.C. researchers explore life expectancy among HIV-positive people
« Reply #1 on: April 01, 2017, 08:40:28 am »
Have not read it fully yet however a few things stand out.

The old age of the data, the treatment of the time, treatment guideline changes particularly the delays in starting treatment back than, not to mention treatment changes & advances and a better understanding of co-factors that have not been filtered out from this data collection.

Glad to say a lot has changed since than, i see co factors are mentioned:

Quote
However, some HIV-positive people, even if they use ART, will not have near-normal life expectancy because of problems largely unrelated to HIV infection, including the following:

smoking
substance use
unrecognized, untreated or poorly managed mental health issues
co-infection with hepatitis B virus (HBV) and/or hepatitis C virus (HCV)

The good news is with treatment now and reducing co factors ill outlive most  ;D

https://www.poz.com/article/life-expectancy-24972-2090 (With treatment) Life Expectancy for Young People With HIV Is Nearly Normal

Jim
« Last Edit: April 01, 2017, 08:43:03 am by JimDublin »
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Offline Wade

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B.C. researchers explore life expectancy among HIV-positive people
« Reply #2 on: April 01, 2017, 08:43:23 am »
Oh Hogwash ,
I was told over 20 years ago in the hospital I wasn't going to live though the night, and here I sit getting old  ;)
« Last Edit: April 01, 2017, 08:48:54 am by JimDublin »
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Offline Jim Allen

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B.C. researchers explore life expectancy among HIV-positive people
« Reply #3 on: April 01, 2017, 08:48:28 am »
Oh Hogwash ,

Hogg RS was one of the references.

Glad to hear you are too old to die young.
« Last Edit: April 01, 2017, 08:51:08 am by JimDublin »
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Offline Wade

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Re: B.C. researchers explore life expectancy among HIV-positive people
« Reply #4 on: April 01, 2017, 09:11:45 am »
 :) :) :) :)
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Offline DANIELtakashi

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Re: B.C. researchers explore life expectancy among HIV-positive people
« Reply #5 on: April 01, 2017, 09:23:02 am »
Live, live, live and l will follow you.
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Offline OneTampa

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Re: B.C. researchers explore life expectancy among HIV-positive people
« Reply #6 on: April 01, 2017, 10:53:32 am »
Oh Hogwash ,
I was told over 20 years ago in the hospital I wasn't going to live though the night, and here I sit getting old  ;)

Woo Hoo Wade!

I was also told about 30 years ago that I had at most 2 more years to live.

Who would have thought that I'd outlive some of my own body parts?

Now I am as young as my nose and bit older than a few teeth (partial plate).  ;D

After a...



(Face, Ass and Tummy)

I even gave birth to a new set of twin cheeks late in life.  ;)

Best all!

OT

 :)[/size]
« Last Edit: April 01, 2017, 11:01:04 am by OneTampa »
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Offline Wade

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Re: B.C. researchers explore life expectancy among HIV-positive people
« Reply #7 on: April 01, 2017, 11:09:44 am »
Ha...Cheers to us old birds OT  ;D

It's too late for us to die young  :) :) :) :)
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Offline Almost2late

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Re: B.C. researchers explore life expectancy among HIV-positive people
« Reply #8 on: April 02, 2017, 03:59:26 am »
My take away from this study is practice good healthy habbits and be kind to your body weather your poz or neg and you may live a long life..

From my understanding some of the people in this study may have also been addicted to injectable drugs too.
"Hang on to your hopes my friend..
thats an easy thing to say,
but if your hope should pass away,
simply pretend that you could build them again"...

Offline DANIELtakashi

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Re: B.C. researchers explore life expectancy among HIV-positive people
« Reply #9 on: April 02, 2017, 04:18:57 am »

From my understanding some of the people in this study may have also been addicted to injectable drugs too.
[/quote]

My gooooooood.
Do some people still continue doing drugs after getting diagnosed ?
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Offline Jim Allen

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Re: B.C. researchers explore life expectancy among HIV-positive people
« Reply #10 on: April 02, 2017, 04:59:48 am »
My gooooooood.
Do some people still continue doing drugs after getting diagnosed ?

Well I will side track slightly on the topic, i know its rude but do want to comment.

Struggling with addiction is not something that goes away with a HIV diagnosis. Alcoholics will continue to drink, IV drug addicts will continue to abuse drugs. And maybe to pick on a more common concern smokers will still smoke.  None of this is healthy and even more so to HIV positive people.

To be honest personally speaking HIV diagnosis just gave me another reason (excuse) not to want to be sober. When you are a drunk, you don't eat well, look after yourself or take your meds and this is on-top of all the other health problems it causes so no wonder the mortality rate is so high when they are included in statistics.

My take away from this study is practice good healthy habbits and be kind to your body weather your poz or neg and you may live a long life..

This is worth repeating.  Indeed, so reducing the risks, cutting out bad habits, and taking your modern HIV meds are key points. People should expect to live a normal life span and there are plenty of studies showing this and evidence backing this up when you factor out things like substance abuse from more modern data. Unlike the report from British Columbia Centre of Excellence.

Jim

People on HIV Treatment Double Their Risk of Death By Smoking
https://www.poz.com/article/smoking-death-risk-26690-1717

https://www.poz.com/article/another-study-finds-smoking-shortens-life-span-hiv
Another Study Finds Smoking Shortens Life Span More Than HIV
For those on antiretroviral treatment, cigarette addiction remains an insidious threat to health and longevity, more so than for the general population.

Even One or Two Drinks a Day Can Be Harmful to People With HIV
https://www.poz.com/article/even-one-two-drinks-day-can-harmful-people-hiv

"Specifically, having at least 30 drinks per month was associated with a 30 percent higher risk of death or physiological harm among people with HIV. Meanwhile, consuming at least 70 drinks per month was associated with a 13 percent increased risk of death or physiological harm in the HIV-negative group."

https://www.poz.com/article/near-normal-life-expectancy-25378-9121
https://www.poz.com/article/life-expectancy-24972-2090
https://www.poz.com/article/HIV-life-expectancy-23682-1943

Jim
 
« Last Edit: April 02, 2017, 05:16:47 am by JimDublin »
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Offline DANIELtakashi

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Re: B.C. researchers explore life expectancy among HIV-positive people
« Reply #11 on: April 02, 2017, 06:00:20 am »
Jim,

Thank you.
I was a bit naiive.
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Offline Jim Allen

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Re: B.C. researchers explore life expectancy among HIV-positive people
« Reply #12 on: April 02, 2017, 06:35:59 am »
Don't worry, you're grand.

It was an honest comment and we all have different experiences hence I thought I would give some insight on why people (like me) continue to act the bollocks after diagnosis.   ;)

Jim
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Offline paintedroom

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Re: B.C. researchers explore life expectancy among HIV-positive people
« Reply #13 on: April 02, 2017, 06:45:32 am »
i confess to have been taking a few things for granted in the last month or two..drinking on the weekends,not exercising etc. even smoking somewhat with a drink.I guess my perverse and tacit reasoning stemmed from the absence of any real pleasures in life - no sex,no romantic possibilities(yes i understand there are possibilities out there but lets face it,it`s considerably more difficult) and the many normal hardships that attend to the everyday.So i rewarded myself on a friday night with wine etc and quit the ascetic routine..jesus life has to have some texture !

i guess this is probably not an unfamiliar path to others with HIV - initial diagnosis,terror and monkish self containment followed by period of ease and taking a chance here and there..and if not careful then a total relaxation of considerations.I should add i`m still at 100% adherence.

I suppose i just have to grow up and realise this is my lot and just make the best of it..and actively pay attention to my health.This might mean hillwalking and rubbing myself against trees/flashing sheep..which i suppose is one step above flashing trees and rubbing myself against sheep.Room for growth.
Dx`d mid July 2016
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Genvoya

Offline CaveyUK

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Re: B.C. researchers explore life expectancy among HIV-positive people
« Reply #14 on: April 02, 2017, 09:48:59 am »
I tend to nowadays take any study about life expectancy in relation to HIV with a pinch of salt. Reason is that trying to extract a 'headline' or average is fraught with difficulty.

For a start, most 'long term studies' will be factoring in many who went through years of effective ART but drugs that were rough on them physically and which may have left lasting effects. It also includes those with co-infections, addictions or mental health problems - all factors that contribute to shorter life-spans, regardless of HIV status. We know that those factors are more prevalent in the HIV community than outside it, so it skews the data. And of course, there are socio-economic issues to take into account too, and adherence issues. Leatherman frequently cites the situation in the Deep South of the USA as being particularly problematic compared to other regions.

So all studies are flawed as a result, and it's difficult to draw any conclusions on a subject area which is changing and evolving all the time.

Nowadays, we know the right dosage of modern meds which have low side effect profiles. We know that if an individual can live a 'healthy' lifestyle and stay adherent, then there is no reason to conclude they will have a significantly shortened lifespan when compared with someone without the condition. Some experts now believe that the lifespan may even be longer than people who don't have the virus due to the increased levels of medical monitoring for people with HIV, that can pick up on longer term issues sooner.

But even all that considered, living 'healthily' is a choice, that everyone has - positive or not. Smoking being bad is not some big revelation unveiled by HIV diagnosis...nor is eating 'bad' foods or not getting enough exercise. From a personal level, I am trying to make the right adjustments but it IS hard. I've now moved (fairly recently) to vaping from smoking, I am *trying* to get more active at the gym and reduce the amount of crap I eat. I'll get there eventually, and being honest it will be HIV that is the spur for me to make these changes, as without that diagnosis I would probably have continued to feel invincible and now I have that crack of fragility which has made me reassess some things. Now, assuming I don't get hit by a bus or get some other nasty disease....in 20, 30 years then it is more than possible that my level of health and fitness will be significantly higher than it would have been if I hadn't been diagnosed. Even factoring in some 'ageing' issues we may have to deal with. I'd say that is a positive thing indeed.

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Offline Delby

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Re: B.C. researchers explore life expectancy among HIV-positive people
« Reply #15 on: April 02, 2017, 05:18:20 pm »
Some really good replies. However, I don't believe we can ignore the fact that during the course of the study, 1 in 5 HIV + people died, compared to 1 in 10 HIV - people. That's double the death rate, which correlates with the 50% reduction in life spans.

I accept that we have to account for certain variables which may skew the data, such as time of diagnosis, start of treatment, toxicity of medication etc, but does that mitigate the abnormal findings. We're still taking about a 50% reduction in life expectancy, right up until the year 2011. That's not long ago.

I worry that whilst we are told by our Drs and clinics that we may live a near to normal life expectancy, the truth is no one knows. The studies we have all read, simply use data to predict potential life spans. But the model cannot be proven because no one has lived that long yet. I'm not saying it's wrong, but I sometimes wonder whether he government, clinics etc all tow the same line so they can encourage people to test and reduce/limits the number of infections. After all it sounds much more palatable if we you're told 'go get tested and life a normal life expectancy'. I'm not suggesting a conspiracy. I'm not a conspiracy theorist! But I do wonder whether there's any truth to this.

And what is near normal life expectancy? Does it mean that reaching 80 or 90 is simply out of our reach. And what are the last decades of our lives going be like? Pain ridden? Illness?

8' sorry if I've upset anyone. I don't mean to sound negative but just wanted to get a few things of my mind and chest.

Love to all

Delby  :)

Offline Jim Allen

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Re: B.C. researchers explore life expectancy among HIV-positive people
« Reply #16 on: April 02, 2017, 05:29:31 pm »
I think overall there are as posted in the thread a number of studies and more modern data that did take factors into account showing a near normal life span.  Also I'm not Canadian ;)

Quote
After all it sounds much more palatable if we you're told 'go get tested and life a normal life expectancy'. I'm not suggesting a conspiracy. I'm not a conspiracy theorist! But I do wonder whether there's any truth to this.

I'm not seeing a conspiracy either, i mean guaranteed not telling people to test and letting them die far sooner without treatment of AIDS is going to result in a far shorter lifespan. That much we for sure know.

The message, treat, and treat them early and a near normal lifespan expectancy is given the data at hand pretty accurate message. It comes with a few "ifs" and "buts" 

I don't think anyone is sugar coating HIV, even with the studies that show we have near normal life span, they highlight the factors and the ""ifs" and "buts" that have a greater impact on our health and overall expected lifespan. Its just different data collected and what you do or do not filter out. Things like smoking, boozing, drug abuse, accidental death, late diagnosis perhaps and/or not taking treatment (old treatment). 

On that note if I get hit by a bus tomorrow its not really relevant to anyone's HIV lifespan estimate and I hope someone is smart enough to filter me out of any such life expectancy study.  :)  If you are looking for a guarantee from a doctor on how long you can live, you are never going to get one. 

Quote
And what are the last decades of our lives going be like? Pain ridden? Illness?
Personally I'm just aiming for sober, who known my father has (FTD),  Pick's disease so I suspect my last few years I will be lost. People are living longer and longer and with that comes health complaints, some used to be show stoppers but now people manage them. I am sure we will have our fair share of old age issues same as out HIV negative counterparts. 

The other part of me thinks whatever some study said, no point in loosing sleep about it. Whatever will be, will be. Live life and don't stress about what could be.

Jim
« Last Edit: April 02, 2017, 06:39:12 pm by JimDublin »
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Online Ptrk3

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Re: B.C. researchers explore life expectancy among HIV-positive people
« Reply #17 on: April 02, 2017, 07:54:16 pm »
Such studies are useful in the aggregate but they don't tell anyone's individual story.

Here's another "Life Expectancy Increases" story from the April 2, 2017, edition of "The Body Pro:"

http://www.thebodypro.com/content/79634/life-expectancy-with-hiv-treatment-continues-to-ri.html?ic=wnhp

Final paragraph of "The Body Pro" story:

The researchers note that in their meta-analysis life expectancy with HIV at age 20 still lags life expectancy at that age in the general population -- 60 years in high-income countries and 51 years in low/middle-income countries. They observe that life expectancy with HIV in high-income countries did not differ between women and men, whereas in the general population women have longer life expectancy than men. The authors suggest that underlying sex-based differences in life expectancy in the general population may not be large enough to appear in small HIV populations with shorter follow-up. The greater life expectancy with HIV in women than men in low/middle-income countries may reflect earlier access to HIV care by women and better retention in care. The researchers propose that life expectancy with HIV may continue to increase as national guidelines now often call for starting ART regardless of CD4 count.
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Offline Delby

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Re: B.C. researchers explore life expectancy among HIV-positive people
« Reply #18 on: April 03, 2017, 04:43:15 am »
Such studies are useful in the aggregate but they don't tell anyone's individual story.

Here's another "Life Expectancy Increases" story from the April 2, 2017, edition of "The Body Pro:"

http://www.thebodypro.com/content/79634/life-expectancy-with-hiv-treatment-continues-to-ri.html?ic=wnhp

Final paragraph of "The Body Pro" story:

The researchers note that in their meta-analysis life expectancy with HIV at age 20 still lags life expectancy at that age in the general population -- 60 years in high-income countries and 51 years in low/middle-income countries. They observe that life expectancy with HIV in high-income countries did not differ between women and men, whereas in the general population women have longer life expectancy than men. The authors suggest that underlying sex-based differences in life expectancy in the general population may not be large enough to appear in small HIV populations with shorter follow-up. The greater life expectancy with HIV in women than men in low/middle-income countries may reflect earlier access to HIV care by women and better retention in care. The researchers propose that life expectancy with HIV may continue to increase as national guidelines now often call for starting ART regardless of CD4 count.

You see that's exactly the point. Here is yet another study published recently that demonstrates that in high income countries, life expectancy with HIV at the age of 20 is 60. That is about 20 years less than our neg peers. So between both studies, they have demonstrated that we won't live anywhere near normal life expectancy.

So why are we continually told by the medical field that we will live a normal life expectancy? Some even have the chutzpah to say we may even live longer than our neg peers! But yet clearly the data contradicts there statements. I'm all for trying to remain positive, but I am a realist and as someone infected with a deadly virus, I believe it is their duty and responsibility to provide us with the facts.

I'm not suggesting that I should be given an accurate date for my passing from this world, but I have a right to the truth and to be told that i'll live a normal life expectancy, when the data clearly shows otherwise, is negligence on a huge scale.

We are all guilty of it. We want to believe it. We tell the newbies the same thing when they find this site. We tell each other. But clearly it's not the case. When i was diagnosed in 2006 in the UK, I'll never forget asking my ID doctor at the time 'how long have I got left'? I was 26 at the time with my whole life ahead of me. He said i'd probably make it till the age of 50-55. That's 25-30 years, which ties in with these studies. Granted, he was a private Dr and didn't specialise in HIV, but rather general sexual health. But still, that conversation has left an indelible mark on me. My current ID Dr of course tells me i should life a normal life expectancy, but the data contradicts this.

Dying at the age of 50 or dying at the age of 80 (normal life expectancy) makes a huge difference. It's nearly 40% more life, which isn't a small figure.

Offline Jim Allen

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Re: B.C. researchers explore life expectancy among HIV-positive people
« Reply #19 on: April 03, 2017, 07:16:28 am »
Quote
but I have a right to the truth and to be told that i'll live a normal life expectancy, when the data clearly shows otherwise, is negligence on a huge scale.

Quote
ll never forget asking my ID doctor at the time 'how long have I got left'? I was 26 at the time with my whole life ahead of me. He said i'd probably make it till the age of 50-55. That's 25-30 years, which ties in with these studies.

Truth to be blunt is you are going to die, if you take your meds daily you going to live a lot longer.

Look I am getting that this really bothers you, and to be honest you seem upset about this and I am really sorry to hear that. You seem to be hanging a lot of weight and value onto a study that for the largest part does not apply to you.

Personally I've been told 3 months to live by a HIV consultant and a few years later when I got my head out of my backside that I would live a "near normal life expectancy" by a GP and should have some retirement plan.  Its just an estimate, a rough guess nothing more and nothing less, so far the GP had a better guess that the consultant.

I just don't understand why if I honest why this is bothering you so much as I am sure you know that nobody can tell you how long you will live and if you believed someone could or someone has told you before they could yeah sure be upset with them, they are lying.

I've never heard a doctor say to me or anyone for that matter "you will live a normal life expectancy".

Quote
negligence on a huge scale.
Not really plenty of studies showing only 5 or 10 years difference, that is near normal. Look if someone told you that you would live to XX age it would be bullshit but also very foolish to believe if i am frank. 

I understand why doctors are saying near normal as most of the studies looking at modern treatment is seeing an improvement in life expectancy that is near normal. I don't see why we would expect this to not get better as a group as the treatments have and are improving combined with early detection and treatment of HIV positive patients.

Take the Swiss studies.
5.6 years difference

Quote
"Studies generally show life expectancy of HIV populations approaching but not matching that of the general population. Estimating life expectancy in HIV populations is difficult because many people with HIV have multiple risk factors such as smoking, drug use and sexually transmitted diseases. Matching HIV populations to general populations for such factors is impossible because vital registration systems lack risk factor data".
http://www.thebodypro.com/content/79247/hiv-life-expectancy-lags-general-population-by-5-t.html?ic=sanext

Very little difference at all in some groups. If you are in that group? good for you.
Quote
There were 1,622 deaths in the cohort, which contributed 82,022 person years to the study, for a crude mortality rate of 19.8 per 1,000 person years. During 2000 to 2002, the life expectancy for a 20-year-old was an additional 36 years. By 2006 to 2007, this figure had leapt to 51 years, so that a 20-year-old could, on average, expect to live into his or her early 70s—almost as long as the general population.
https://www.poz.com/article/life-expectancy-24972-2090
Related in full: http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0081355

Very little difference again

https://www.poz.com/article/HIV-life-expectancy-23682-1943
Quote
Basing its projections on a theoretical 35-year-old man who has been on HIV treatment for five years, the study found that those with CD4 counts above 350 could expect to live to 77 on average. On the flip side, those without an undetectable viral load would lose 11 years of life expectancy, and those with less than 200 CD4s could expect to live only to 55.
Related study: http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0081355

Life expectancy in older people with HIV could EXCEED the average – as long as ART keeps working  :) - Good news for Wade and us on the forum  ;D

http://www.aidsmap.com/Life-expectancy-in-older-people-with-HIV-could-exceed-the-average-as-long-as-ART-keeps-working/page/2551483/#item2551485

13 years however removing factors leaves a 5 year difference
http://www.aidsmap.com/Life-expectancy-in-HIV-positive-people-in-the-US-still-lags-13-years-behind-HIV-negative-people/page/3040314/

Now the headline of this one is 13 years difference however the devil is in the detail as this 1 study is not taking other life factors into account and when they do take this into account could only find found a 5 year difference, not 13 as the the headline and intro says, now they also did not factor in all the risks and reasons, they looked at 1996-97 and 2011.  I don't live in the past things change, i can reduce my risks and who is to say i could be hit by a bus in the morning or perhaps not. 

Overall the studies are very interesting to read but data studies on populations are something to read and than move on. 

Jim
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Offline Delby

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Re: B.C. researchers explore life expectancy among HIV-positive people
« Reply #20 on: April 03, 2017, 10:55:50 am »
Jim thanks for the reply  :)

But I did make it clear that I am not expecting a Dr or anyone else for that matter to predict when I'm going to die. That would be a little spooky! However, as a father of 2 young children, I would like to know what type of life span we are likely to expect. Yes I understand that there are many variables, just like the ones that exist in the general population. But when you are negative, you don't think about dying early. At least I didn't. Dying was something that would happen when your much older and I felt like if I could take care of myself, eat well, etc then I'd have a chance at least of living a good old age. Of course something else could of got me early, but again your mind isn't conditioned to think like that when you're 'healthy'.

With HIV, we are continually told that we can live a normal life expectancy, but these 2 studies clearly show a huge reduction (almost 40% - nearly half!!) in life expectancy. Had I known that I may only live till 50, then perhaps i would of thought twice about marriage and children. I felt like at least I could have a chance at being around for my kids, because that's what the Drs were saying. Would I have got married and had children, had I known my life expectancy would be nearly cut in half - i'm not sure.

These studies really do contradict many of the studies you pointed at Jim. I've seen them all before and they were very encouraging. Just a little confused now...

Sorry for my rant guys... ???

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Re: B.C. researchers explore life expectancy among HIV-positive people
« Reply #21 on: April 03, 2017, 11:55:55 am »
Quote
Dying was something that would happen when your much older and I felt like if I could take care of myself, eat well, etc then I'd have a chance at least of living a good old age Of course something else could of got me early, but again your mind isn't conditioned to think like that when you're 'healthy'.

With HIV, we are continually told that we can live a normal life expectancy, but these 2 studies clearly show a huge reduction (almost 40% - nearly half!!) in life expectancy

But that's the point, its just one study its a guess and this guess is that you will die soon, its a bit of doom and gloom from Canada.

Thankfully there are plenty of professionals and studies that filtered out factors, and deep-dived into the data and found that for many of us this is largely within our own control and than the answer is "near normal".

All I can conclude in high level between the studies 4-5 of them saying near normal mind you is that if you want to live longer or increase the chance than live healthier and put in the effort.

Quote
felt like at least I could have a chance at being around for my kids, because that's what the Drs were saying. Would I have got married and had children, had I known my life expectancy would be nearly cut in half - i'm not sure.

Come now, I have two young children myself and I know you would not change that for the world either. Look its sad you could be hit by a bus tomorrow but you should also if possible plan for this, so have life insurance and family support setup, a living will for custody and guardianship.

I wish someone could tell me for sure ill be here in 50 or 60 years time but life does not work like that. I thing i know is I cut out my risks so it will not be HIV cutting me 40% short as you put it, if i end up short it will be due to my own behavior or other unforeseen circumstances.

Quote
These studies really do contradict many of the studies you pointed at Jim. I've seen them all before and they were very encouraging.

Not really, its just one filters stuff out, takes updates into account and new medical knowledge and takes changes into account or looks at newer data. Like the ones I mentioned. 

Don't take population data from the past to heart, it does not mean anything on its own without analysis and correction and even than its a guess.

Jim
   
« Last Edit: April 03, 2017, 12:36:45 pm by JimDublin »
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Offline CaveyUK

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Re: B.C. researchers explore life expectancy among HIV-positive people
« Reply #22 on: April 05, 2017, 03:05:49 pm »
I've said it before in this thread but I'll say it again. ALL studies into life expectancy are flawed.

Studies done recently of any size will be looking back years and into the realms of the medications which were difficult to adhere to, were prone to resistance and caused significant physical issues. They factor in a large number of people with mental health issues, drug addiction and so on, and will rarely eliminate non-HIV causes of death - after all, was death from a heart attack caused by HIV, or by the effects of meds, or from years pre-HIV of eating cheeseburgers?

In 2017 we (meaning 'science') know more about HIV than ever before. We know from learning over the last 30yrs about drug dosages, resistance and effect on a myriad of body functions. All experts believe that using current medication, staying adherent and keeping a suppressed VL and living a 'healthy' lifestyle will mean that difference in average life-span between an HIV+ and - person are minimal, if a difference exists at all.

Lets also remember that word 'average'. Applying an average to anything will look at the entire population, but also means there are outliers both above and below. So if the average projected lifespan of a 20yr old who stays adherent and healthy is 50yrs (so they would expect to live to 70), it means we will see some who die well before this, and some who will live well beyond this.

It's a fairly moot point though. If someone in their 40's now gets to their 70's then really is there that much difference if they die at 72, whilst their HIV- neighbour lasts until 77?

Lots and lots of things can have a negative impact on lifespan. Chronic illnesses do - diabetes, heart problems, arthritis etc. Obviously acute illnesses such as cancer have a massive impact on life span (and I'm sure I read somewhere than even in the general population, 1 in 3 people will receive a cancer diagnosis at some point of their life!). Some sports will have an impact, especially extreme ones - I often wonder what damage some of the folks I work with who obsess about Ironman Triathlons are doing to their bodies long term. Being too sedentary will.  Living in polluted cities will... The list goes on.

Finally, from an HIV specific perspective, all current projections are based on the current state of medications and scientific knowledge. A similar study 10, 15 years ago would have been bleaker. But it doesn't cater for future advances, both in treatment and knowledge. Meds in a decades time are likely to be even better than the ones now. The next big medical advancement will likely address the chronic inflammation which can cause some issues of aging to appear a little earlier than in the general population...now it may be 10,15 or 20 years away, but that is quite likely to be within your lifetime and may have yet more of a 'normalising' effect on life-span.

So it really makes no sense to read a study based on historical data and conclude anything from that.

Just this week, the news emerged that one of my neighbours died in a horrific car crash recently. He was in his early 50s and had a wife and child. Very sad. Also, at work in the last 3 months two people died - one from a heart attack and I'm not sure the other has had a reason publicised. One in her 30's and one in her 40's. As far as I know, none of them were HIV positive. Life can suck hard at times, and can end for many reasons. It really is pointless worrying about what may happen with HIV when in all reality, if you keep the virus suppressed with meds, you will eventually die from something else entirely.
« Last Edit: April 05, 2017, 03:15:23 pm by CaveyUK »
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Offline Jim Allen

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Re: B.C. researchers explore life expectancy among HIV-positive people
« Reply #23 on: April 05, 2017, 03:18:15 pm »
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Just this week, the news emerged that one of my neighbours died in a horrific car crash recently.

Sorry to hear that, hope you are doing ok.

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from years pre-HIV of eating cheeseburgers?

I thought Canadians ate bacon?

Jim
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Offline CaveyUK

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Re: B.C. researchers explore life expectancy among HIV-positive people
« Reply #24 on: April 05, 2017, 03:28:14 pm »
Sorry to hear that, hope you are doing ok.

Thanks, I knew him fairly well but hadn't seen him for a while. He lived down the road rather than being an immediate neighbour. I know it's shaken our little estate though. Lovely bloke
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Re: B.C. researchers explore life expectancy among HIV-positive people
« Reply #25 on: April 05, 2017, 03:38:28 pm »
Thanks, I knew him fairly well but hadn't seen him for a while. He lived down the road rather than being an immediate neighbour. I know it's shaken our little estate though. Lovely bloke

Its always terribly sad, however when its a character that people know, who passes on it does have its impact on the communities / neighborhood like that.

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Offline CaveyUK

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Re: B.C. researchers explore life expectancy among HIV-positive people
« Reply #26 on: April 05, 2017, 03:56:41 pm »
Just back to this Canadian study from British Columbia.... Just done a quick google, and it seems that adherence rates on ART are particularly low in BC, partly due to injecting drug use and partly due to indigenous ancestry and social factors. For women, a recent study states that only 57% are adherent on meds, and this only rises to 77% for men.

So there may be specific geographic factors at play here. Especially if you compare with the UK, where adherence is 94-96%. Adherence levels will differ in different countries for a variety of reasons, and even different regions within a country which seems to be a case with BC.

Just another reason not to take a single study as gospel

Googled sources :
http://www.aidsmap.com/Women-significantly-more-likely-than-men-to-have-suboptimal-adherence-to-HIV-therapy/page/3115332/
http://www.nat.org.uk/sites/default/files/HIV_futureNHS_Dec16.pdf


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Offline harleymc

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Re: B.C. researchers explore life expectancy among HIV-positive people
« Reply #27 on: April 08, 2017, 10:50:24 pm »
Cavey's spot on, the BC epidemic is not dissimilar to the Russian epidemic.
Largely fueled by IV drug use, extreme social inequality and poverty.

Another point about the lower life expectancy is, how advanced the HIV disease process is at diagnosis. Even for folks with low cd4 counts, if you get through  one year of suppressive treatment you're going to do ok.

Forsure we need to get off the smokes and avoid coinfection with hep B or hep C

Offline Delby

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Life Expectancy Study
« Reply #28 on: November 15, 2018, 09:13:42 am »
Hi Folks

I came across this study on the lancet, relating to life expectancy or HALE - Health Adjusted Life Expectancy. https://t.co/JxovWgtYWb

I'm trying to understand the findings, as it follows individuals from 1996-2012 and concludes that for someone at the age of 20, HALE is circa 31 yrs for PLWHIV vs 58 yrs for someone living without HIV.

I'm confused?

Delby  ???


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Re: Life Expectancy Study
« Reply #29 on: November 15, 2018, 09:34:24 am »
Ive sure I have read this study before and discussed it vs findings, all i recall was the vast changes between 1996 and post 2010's in terms of treatment, management of HIV, management if OI,s as a population and how statistics from the past are not like for like with today, there are some more modern studies on the topic somewhere ...

Anyhow, yes that is what this study published you read it correctly. What's causing the confusion?

Jim
« Last Edit: November 15, 2018, 09:48:43 am by JimDublin »
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Offline Carlos 32

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Re: Life Expectancy Study
« Reply #30 on: November 15, 2018, 10:18:43 am »
Preocupantes los resultados del estudio si se comparan con otro realizado en el año 2017 en donde se indicó que ya teníamos una expectativa de vida cercana a la normal, según el estudio que compartes no viviríamos mas de 51 años.

Offline Delby

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Re: Life Expectancy Study
« Reply #31 on: November 15, 2018, 11:57:43 am »
Ive sure I have read this study before and discussed it vs findings, all i recall was the vast changes between 1996 and post 2010's in terms of treatment, management of HIV, management if OI,s as a population and how statistics from the past are not like for like with today, there are some more modern studies on the topic somewhere ...

Anyhow, yes that is what this study published you read it correctly. What's causing the confusion?

Jim

Thanks Jim. Well the confusion is due to the conflict of information. On one hand we’re told time and time again that PLWHIV can live a near to normal life expectancy, yet this study has data which proves otherwise and tells a completely diffferent story. Life expectancy according to this study is 31 additional years. So a 20 yr pls can expect to live to circa 50. That’s nearly half the life expectancy of a 20 yr old living without HIV, as they have an additional 58yrs,  according to the study.

Also bearing in mind that all the studies that say we have a normal life expectancy are merely conjecture and not based on evidence but models that forecast. This study deals with real data. So which do we believe?

Offline Jim Allen

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Re: B.C. researchers explore life expectancy among HIV-positive people
« Reply #32 on: November 15, 2018, 12:20:20 pm »
This is the same study and questions from before hence my dejavu feeling ;D

Before you had HIV nobody had a crystal ball on your personal life expectancy, that has not changed. No amount of Canadian data from 96 is going to change that

I merged the threads and I stand by my own thoughts that nobody should take a single study particularly population data from the past to heart when treatment and management of HIV, OI's was vastly different. A lot has changed since than and you live in the here and now 2018  2 decades on and your not getting 96 treatments today or management of OI's etc are you?  Your doctor today (I hope) would vastly know more than a doctor in 96 -2012 would have done

Live your life and don't stress about it so much, focus  what you can to be healthier if you're concerned but remain focused on what you can change not what you can't as it's futile and a waste.

Question. Is this keeping you up at night or causing some level of destress/angst?

Jim
« Last Edit: November 15, 2018, 12:28:53 pm by JimDublin »
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Offline Delby

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Re: B.C. researchers explore life expectancy among HIV-positive people
« Reply #33 on: November 15, 2018, 01:23:53 pm »
I’m sorry Jim I respect your opinion but I disagree with you. I’m not asking you to determine how many years I have left in this world. Yes that would be futile. What I am asking for, is clarity around all the studies that been conducted. Researchers and scientists owe us the truth. Having an additional life expectancy of 60yrs compared to 30 yrs, if Poz, is a huge difference. It’s not even marginal. So yes, I do want clarity around the projections and outcomes for this disease. To suggest we don’t deserve that much is ridiculous. It’s every patients right to have an understanding of the trajectory of the disease they are living with.

When a new person comes to this forum, we are continually telling them that they have a normal life expectancy. That makes a huge difference in the motivation and expectation of the person as opposed to telling them they only have another 30yrs. Fine if you’re 60 but not if you’re in your 20s.

I’m fed up of reading so many studies that seem to contradict the line that all the drs and health advisors are asked to tow, which is tell your patients they’ll live till a ripe old age. I’m not one for conspiracies but sometimes I think it’s all a game plan to get people onto treatment and nothing more.


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Re: B.C. researchers explore life expectancy among HIV-positive people
« Reply #34 on: November 15, 2018, 03:00:19 pm »
Quote
I’m sorry Jim I respect your opinion but I disagree with you.

That's okay i'm not here to be agreed with, neither did I expect you to agree with me.

Look even studies of HIV negative population and life expectancy the numbers will change with time or be slightly different depending on who runs the analysis, its a bit of variance but i don't think this is a contradiction or hiding the truth either.

Quote
I’m not asking you to determine how many years I have left in this world. Yes that would be futile. What I am asking for, is clarity around all the studies that been conducted. Researchers and scientists owe us the truth. Having an additional life expectancy of 60yrs compared to 30 yrs, if Poz, is a huge difference. It’s not even marginal. So yes, I do want clarity around the projections and outcomes for this disease. To suggest we don’t deserve that much is ridiculous. It’s every patients right to have an understanding of the trajectory of the disease they are living with.

Okay well I never claimed you did ask me or expected me to predict your personal lifespan. You are focused on this one study when its only one analysis from past data.

The context I see this is its just a single analysis that shows a fantastic outcome! Yup i said it.  For me it goes towards confirming the more modern studies pointing towards near normal lifespan average for the population with treatment I would argue even.

My thinking is if the average population in 96 had 30+ years, this is a starting point. Now why would all the advancements over the past 22 years in treatment, understanding and care not move the populations life expectancy up? Why would someone joining the forum and starting treatment in 2018 have the same expectations placed on them as 1996?

Not only has HIV care changed but also treatments for other issues and illnesses.

Quote
I’m fed up of reading so many studies that seem to contradict the line that all the drs and health advisors are asked to tow, which is tell your patients they’ll live till a ripe old age.

My doctor says: Take this pill, when a better pill comes you will take that one, in the meantime live your life!  Anyhow i'm just not seeing any huge contradictions, perhaps also accepting that the health advisers are better read on the topic.

Maybe I am reading things differently though myself, I see lots of studies into different aspects of the HIV population, the population itself, treatments, treatment start times, co-moralities and manageable health factors coming up with really positive outlooks.  Given if you ask them a date its going to vary somewhat that's to be expected.

Quote
I’m not one for conspiracies but sometimes I think it’s all a game plan to get people onto treatment and nothing more

Yeah I fully agree ... Its the conspiracy to save lives as without treatment you die.

I know that sounds short but if you don't believe this well the real world data is called the "1980's" and on a global front the overall height of death numbers from 2003-2005 due to low treatment access, that started to change as ART became more available. Than the numerous studies to name a key one the "START" studies 2015 that showed better health outcomes when people start treatment instead of waiting to get sick, damaged or die .

So no surprise doctors recommend treatment if you ask me.

Quote
What I am asking for, is clarity around all the studies that been conducted. Researchers and scientists owe us the truth.

Well all I can offer is my thoughts on what I have read and it all points towards a good outcome with treatment and management of lifestyle & commodities.

The thing is science does not stand still its a continuous progression and challenging what we think we know, on this topic particularity as the variables have changed a lot and continue to do so. Think about the treatments and healthcare, treatment starting guidelines and % of the population on treatment, this has continuously changed for the better over the past 22 years and also to factor in the general life expectancy and treatment of illness is always developing and changing.

The good thing is the studies are published for all to see and read.

Edit to add:

I think you have the clarity, from what I gather your doctors are telling you to expect a relatively normal lifespan or at least not dramatic shortened by well treated HIV.

I'm just really unsure what additional "clarity" would look like for you or you feel is owed to you? Is it some type of statement or a summary on current studies and from who would that come?

Personally I would focus on my family, and live life. Focus if you like on what you can to be healthier if you're concerned but don't focus on what you can't change or some study about data from the past.

Anyhow hope you find what you are looking for, peace.

Jim
« Last Edit: November 15, 2018, 03:14:44 pm by JimDublin »
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Offline MarkintheDark

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Re: B.C. researchers explore life expectancy among HIV-positive people
« Reply #35 on: November 15, 2018, 03:38:22 pm »
Guess I'll jump into the caldron.  The "crystal ball" aspect of these studies bothers me.  For example, my dad died of prostate cancer in '85.  Today, however, he'd have a longer life expectancy because of the progress made in treatments.

These studies strike me as more of a snapshot.  I question their usefulness, as has been pointed out.  A long 1996-2010 study of a population in BC can't predict the future.  With intelligently-targeted chunks, say, of five-year increments limited to a significant population, like a  country, it might identify trends that perhaps take into account progress with ARVs.  But that's it.

If one wants to argue the futility of "crystal ball" studies, look no further than many of the 26% of those 1.3M with HIV in the States who are pre-HAART survivors - like me - who were told at the time they had only a few years to live. 

If you want a reason to just "live your life," as Jim so often puts it, the experience of many LTS is a better guide than any study.  Many of us, having been given the grim prognosis, planned our lives as though, in fact, we only had a few remaining years.  Except we survived.  Many of us just gave up on planning for ANY future.  Most pointedly, that affected our financial planning.  As a population, we've ended up with higher rates of poverty.  Speaking for myself, I'd have handled my six-figure nest egg differently, but I was told I had only 5-7 years.
« Last Edit: November 15, 2018, 04:00:40 pm by MarkintheDark »
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Offline CaveyUK

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Re: B.C. researchers explore life expectancy among HIV-positive people
« Reply #36 on: November 15, 2018, 07:47:53 pm »
I always want to post on threads like this, then realised that I already have several times - so scroll up to see my main points as they still stand.

Another way to look at it, is that in 2018 science knows - through monitoring and data gathered, that an individual who is diagnosed these days, takes ART and reaches (and stays) UD, there is a normality about the way their body functions which leads to the conclusion that life expectancy shouldn't be particularly different than if they were negative. The caveat is low-level inflammation which can cause certain ageing disorders to come on a bit sooner if a person is genetically predisposed to them, which adjusts the prediction to 'near-normal' life expectancy.

Looking historically is different, for all the reasons I've covered already - old medications, lifestyle issues, adherence issues, impact from OI's etc. Whilst is why statistically-driven studies based on historical data are always flawed, and often paint a bleaker picture.

The reality is barring the inflammation issue (which I still believe will be addressed via future drug regimens), an HIV+ person adherent to treatment can live a pretty normal life. They can be fit, if they choose. They make lifestyle choices just like anyone else, and the cummulative effect of the way they live their life - positively or negatively - will have an effect one way or another on their life outcomes. Far more than a suppressed virus will have.

So live like a monk and reach your 80s/90s or be a party animal, get shitfaced, do lines of coke and smoke yourself stupid and expect to shave a bunch of years off the average. It's your choice.

HIV *may* have an impact in later life, but this is likely to be far less of a factor than other lifestyle choices, in the big picture.
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Re: B.C. researchers explore life expectancy among HIV-positive people
« Reply #37 on: November 19, 2018, 05:23:46 pm »
Life expectancy in older people with HIV could exceed the average – as long as ART keeps working

http://www.aidsmap.com/Life-expectancy-in-older-people-with-HIV-could-exceed-the-average-as-long-as-ART-keeps-working/page/2551483/#item2551485

Offline Jmarksto

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Re: B.C. researchers explore life expectancy among HIV-positive people
« Reply #38 on: November 20, 2018, 03:14:00 pm »
Based on a very brief review of these studies I would offer a strong caution against using them for any useful projection of life expectancy in PLWHIV. 


First, I think the two studies (Lancet and CATIE web sites) are one in the same -- or at least use the exact same data set.


Second, the abstract on the CATIE website says "
Indeed, the B.C. researchers stated that the “substantial differences in health-adjusted life expectancy could be attributed to a history of injection drug use” among HIV-positive people in this study."  So the reported life expediencies are not adjusted based on significant co-factors that could otherwise explain the difference.[/size]

Finally, the Lancet notes that the data set are "electronic health records" - or in other words, the researchers did not track the participants directly.  Well, you can imagine that there are many more/detailed health records on people that are sick and die than those that are healthy and don't come into the doctor or hospital.  It really isn't clear from the brief summaries how that data bias was treated in the analysis. Given that the co-factors (which is a significant issue with this study) were not accounted for I doubt that the data bias was either.


« Last Edit: November 20, 2018, 03:20:09 pm by Jmarksto »
03/15/12 Negative
06/15/12 Positive
07/11/12 CD4 790          VL 4,000
08/06/12 CD4 816/38%   VL 49,300
08/20/12 Started Complera
11/06/12 CD4   819/41% VL 38
02/11/13 CD4   935/41% VL UD
06/06/13 CD4   816/41% VL UD
10/28/13 CD4 1131/45% VL 25
02/25/14 CD4   792/37% VL UD
07/09/14 CD4 1004/39% VL UD
11/03/14 CD4   711/34% VL UD
03/13/15 CD4   833/36% VL UD
04/??/15 Truvada & Tivicay
06/01/15 CD4 1100/50% VL UD
10/16/15 CD4   826/43% VL UD
??/??/2017 Descov & Tivicay
2017 VL UD, CD4 stable around 850
2018 VL UD, CD4 stable around 850

 


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