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Well Controlled HIV - Risks of Death No Higher Than Rest of Population...

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Dr.Strangelove:

--- Quote from: mecch on March 13, 2013, 04:16:37 AM ---Just because a study can be misunderstood by the public or pop culture or people who need to misapply everything to their self, as they are the center of the universe and everything is about them.... doesn't mean the news of the study wrong, or useless.
--- End quote ---
Exactly!

I often feel that people have problems interpreting scientific studies or putting them in perspective. In an ideal world science journalists should interpret the science and translate it to the general public. But more often than not they are doing a bad job and/or sensationalize.

What bothers me is that this kind of misinterpretation and poor understanding of scientific findings by the public falls back on the researchers and harms their reputation: When the bee-based HIV cure doesn't show up any time soon, it's the scientists who gave us wrong hopes and deceived us, right? Or if you caught HIV that one time in your life when you didn't use a condom then clearly the statistics about transmission risks must be all wrong...

It's just easy to blame something that you don't really understand. On the other hand I also think that many scientists do a poor job communicating with the public.

mecch:
P.S. your avatar is so trippy....

Mishma:

--- Quote from: jkinatl2 on March 13, 2013, 01:24:57 AM ---I submit that the news might be great for newly diagnosed people, or people who were diagnosed and responded favorably to treatment before their CD4 counts fell below 500. Sadly, many of the people in this forum alone (many of them newly diagnosed) do not meet that criteria.

There is compelling evidence that longevity and quality of health are more accurately measured by the nadir cd3 count. In other words, at our current (albeit fluid) quality of care, if you had a cd4 count of 100, but now have a cd4 count of 800, your lowest measured cd4 count is the standard used to determine your personal health prognosis. Well, that and the zillion other things that each individual possesses which makes up their biology.

That's one of the reasons it is frustrating when a study is taken out of a rather narrow context (and which is useful in a data extrapolation manner by researchers) and then foisted on the masses as though we were groundbreaking.

I have zero doubt that I, having a current cd4 count of 250 and a nadir of 12, will live much longer thanks to ART. I do not, however harbor optimism that I will see my 70th birthday. Given my medical health, ongoing and past issues, scarring of the lungs, damage to the brain and what-not, I think I will be a marvel if I limp past 60.

And I really am perfectly OK with that. Sure I have wasted gobs of time. Weeks, sometimes months. But when I have had the strength/willpower/courage to live fully, I think I've enjoyed an eventful, if not particularly noteworthy series of circles around the sun. Been nicer than I have been mean (sorry cabal, it's true.) Loved hard and long and usually pretty well. Paid Goddamned attention whenever I, well, thought to pay Goddamn attention, and failed as exquisitely as I have triumphed.

I can also make a red beans and rice that you would literally enjoy if you had to eat it out of the warm, scooped-out chest cavity of a human toddler.

These studies are great for research. Their translation into the real world remains to be seen.  Of course, add to the caveats the US's whopping 25% drug rate of treatment success/adherence, throw in some crystal meth, and other societal junk, and it really boils down to what a person is willing to do in order to promote that holy grail of a normal lifespan.

I honestly think most of our newly diagnosed members will meet or exceed that. Not because I have faith in their ability to adapt to their diagnosis. No, this forum is rife with biostasis. However, for the lucky ones (and most newly diagnosed and some of us Jurassic folks) medical science is struggling to, and I predict will, close the gap between effective treatment and easy treatment.

These studies, as John Cougar-Mellencamp so eloquently put it, "Stand on this single print of time."

--- End quote ---

I know I couldn't say it better than you have. Good points and insight. Like you I wonder if I'll make 60 (one year away) with all my quality of life issues I don't even know that I want to, had I not just met my new granddaughter!

YellowFever:
Here's the link to the original paper:

http://journals.lww.com/aidsonline/documents/mortality_in_well_controlled_HIV_QAD_27_6.pdf

Also to note: Just because this study examines only a narrow subset of HIV+ people, doesn't mean that the study is flawed. It would be flawed if they concluded by generalising their results to the entire population, which they did not.

So then what good is the study then? Before this, other studies have shown that even those with VL/UD under ART do not get to live normal livespans. Which then begged the question: Are the meds shaving a few years of our lives? Is there some other metric of HIV that we could/should be measuring, instead of just viremia and CD4?

What this paper is essentially saying is that there is a lot of noise in the data for life-expectancy of HIV+ people and they are attempting to clean some of it up.

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