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Pseudo-scientific sensationalism

Blogs > Firereaver
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Firereaver
Profile Blog Joined October 2010
India1701 Posts
Last Edited: 2010-12-15 00:35:21
December 14 2010 23:55 GMT
#1
Hi all,
This I felt was needed to address a serious misconception people have in the "HIV-is-now-curable" thread.
+ Show Spoiler +
On December 15 2010 08:08 dudeman001 wrote:
Holy check, the hell this guy went through to get cured, but somehow it worked.
http://gizmodo.com/5713498/man-officially-cured-of-hiv
Show nested quote +
For the first time ever, a man has been cured of HIV. The remedy may nearly have killed him, but it opens a door—just a crack—to hope that we may someday kill off the scourge for good.

Strangely enough, the diagnosis that most concerned Timothy Ray Brown in 2007 was acute myeloid leukemia. HIV has been increasingly thought of as a manageable disease, though certainly a terribly burdensome one. What brought the 42-year old Brown under the care of Germany's Charite Universitatsmedizin Berlin hospital was the more immediate threat his cancer posed.

The treatment Brown underwent was aggressive: chemotherapy that destroyed the majority of his immune cells. Total body irradiation. Finally, a risky stem-cell transplant that nearly a third of patients don't survive—but that appears to have completely cured Brown of HIV.

Doctors were savvy when they chose a stem cell donor for Brown. The man whose bone marrow they used has a particular genetic mutation, present in an incredibly small percentage of people, that makes him almost invulnerable to HIV. With Brown's own defenses decimated by treatments, the healthy, HIV-resistant donor cells repopulated his immune system. The initial indications that the virus had abated were promising. But only just now, having taken no antiretroviral drugs since the transplant, and following extensive testing shows no signs whatsoever of HIV, have his doctors given the official word:

He's cured.

What does this mean for the future of treatment? It's not as though every HIV patient can or would want to go through the tremendous suffering that was prelude to Brown's recovery, or be able to afford the procedure if they could or did. But for the first time, we know that HIV can be cured, not just managed. It opens new avenues of research—gene therapy, stem cell treatments—that may otherwise have been thought dead ends.


Hooray for hope progression in medicine. Another article detailing a little more about the donor's natural resistance to HIV: http://www.rawstory.com/rs/2010/12/doctors-hivinfected-man-cured-stem-cell-transplant/


Unrelated allogeneic Stem Cell Transplants(SCT) is itself a very morbid and high mortality procedure costing well over 600,000 USD (Total treatment costs) and longterm immunosuppression. Over a period of 1-2 years , projected treatment for adult leuk's - costs are anywhere between 1-2 million USD especially if there is complication or relapse.
AML is a frequent complication of HIV in the first place and HIV-AML is poor prognosis to begin with. A normal Allogeneic SCT for Myeloproliferative disorders already puts you at anywhere between 10-40% mortality risk, varying on the place you get it done at, not to mention anything about the morbidity of the procedure.
Now regarding this particular treatment-theory, PLEASE REMEMBER(and this has to be in caps) YOU HAVE TO BE HLA-MATCHED with the donor to even think of a transplant option to begin with and the chances of that happening is in the 1/10-100million chance given the 2 Bone-marrow databases in the world currently i.e USA & Germany. On top of that, the CCR5 mutation is an EXTREMELY RARE one to begin with and the chances of finding a HLA match within this select population is literally IMPOSSIBLE!
Now if suppose a Haplo-matched(i.e- a half-matched therefore slightly more chance of finding one) individual with CCR5 mutation did come along, the chance of GVHD(Graft-Vs-Host Disease) related death alone would make me discourage the patient from even consider this as a viable treatment option.
Also to keep things real, HIV is no more a 'killing' disease. As long as proper precautions are taken and antiretroviral support is continued, an affected persons 10 year survival is quite high and I have personally seen the first patient to be diagnosed as HIV-positive (in 1985-86) in India who still follows up at our hospital. He is quite fine and aside from having to wear socks and shoes and maintain a high level of personal hygiene he seems perfectly normal, all this - living in a third-world country and now almost 25 years into the disease process.
While the case is interesting, please read the Lancet reference about it likely not having any immediate impact on HIV-treatment. Also, steer clear of pseudo-scientific sensationalism and I'm not saying that to sound patronising in any way. Just going through that Gizmodo article after going thru the original Lancet one made me sorta mouth-vomit at the way its being projected as a potential cure when its medically(and mathematically) NOT VIABLE! Please always go thru the real article which in this case stays firmly grounded in the reality of this all being just a one-off case with pleasing results but nothing more.
Cheers
.+ Show Spoiler +
P.S: I dont want to risk sounding like a pompous douche and post my credentials here so if anyone feels like I'm talking thru my hat, please PM and Ill fill you in on articles and who exactly I am to know this, in detail


****
"They drone drone drone , me win" - JangMinChul(Iron/oGsMC)
Grend
Profile Blog Joined April 2010
1600 Posts
December 15 2010 00:12 GMT
#2
I feel like youre overreacting. To me the interesting point of the story was the fact that someone had been cured of HIV. That has never happened before, thus it is newsworthy. I got the impression that people mostly found it to be an uplifting piece of news (something "impossible" just happened) and that it was kind of clear that it was not a viable cure for the masses iin the percievable future.

To me, telling people to stay away from "pseudo-scientific sensationalism" is a stupid thing to say. The reason why people do not do this is because they do not have the knowledge to separate sensationalism from the more pragmatic approach to the same story, or they are not aware of where they can get more balanced news. Telling them to do so without giving them any guidelines, or help in how to do so does not seem like it would help much.
♞ Against the Wind - Bob Seger ♞
Jayme
Profile Blog Joined February 2009
United States5866 Posts
December 15 2010 00:15 GMT
#3
Fair enough I suppose but do realize the guy was suffering from cancer already so he didn't have much to loose by trying.

The main thing is that it's a STEP in the direction of the cure. It's obviously not the answer and no body of any sanity claims that it is.
Python is garbage, number 1 advocate of getting rid of it.
Firereaver
Profile Blog Joined October 2010
India1701 Posts
Last Edited: 2010-12-15 00:27:22
December 15 2010 00:24 GMT
#4
In case you read the Gizmodo articles you wud have seen how they talk about it being a likely viable future treatment option and even.
Which it most eminently IS NOT! Not in any shape or form as clearly stated in the Lancet article.
The only real treatment of HIV lies in either Gene-therapy or some hither-to un-discovered Anti-retro-viral drug!
Haematopoetic Stem-cell therapy inherently (and unfortunately) is NOT a future path to the cure of HIV.
Gene-therapy is a likely avenue, and while you may think that the two are in some way inter-connected, treatment-wise they are worlds apart.
The main thing is that it's a STEP in the direction of the cure. It's obviously not the answer and no body of any sanity claims that it is.

The Gizmodo article says that it may open up avenues of research but please read the Lancet article(which is just a case-report btw) where it clearly says that this is NOT a likely future way to treat HIV.
Lemme be clear on this guys. I'm just saying I hate the way the article stated the matter and I also hated the way it makes the lay-person feel excited about SCT's being a future cure-option. Sorry if I offended anybody. I love Gizmodo usually but this one is just terrible abuse.
"They drone drone drone , me win" - JangMinChul(Iron/oGsMC)
DarkPlasmaBall
Profile Blog Joined March 2010
United States46123 Posts
December 15 2010 00:29 GMT
#5
I think your post is definitely something to keep in mind. But also:

Can you post your credentials anyway, since you don't have any sources or references for your OP? Thanks
"There is nothing more satisfying than looking at a crowd of people and helping them get what I love." ~Day[9] Daily #100
shindigs
Profile Blog Joined May 2009
United States4795 Posts
December 15 2010 00:30 GMT
#6
There's a new "cure" for HIV in these sensationalist articles every year - the public needs a higher science education =(

Thanks for the writeup.
Photographer@shindags || twitch.tv/shindigs
kyzers0ze
Profile Blog Joined March 2009
Singapore1073 Posts
December 15 2010 00:34 GMT
#7
Journalists blow things up like they always do.
8==========))
kingjames01
Profile Blog Joined April 2009
Canada1603 Posts
December 15 2010 00:36 GMT
#8
BRAVO! I sent my wife the link to the other thread and she said EVERYTHING that you said. =)

It is unfortunate that Gizmodo took this approach to report the story. A more balanced report would have been more illuminating and still have been able to provide us with the headline.

My wife commented that it would have been difficult to report all of the details because the common lay-person is not trained in the science.
Who would sup with the mighty, must walk the path of daggers.
Firereaver
Profile Blog Joined October 2010
India1701 Posts
December 15 2010 00:42 GMT
#9
+ Show Spoiler +
On December 15 2010 09:12 Grend wrote:
I feel like youre overreacting. To me the interesting point of the story was the fact that someone had been cured of HIV. That has never happened before, thus it is newsworthy. I got the impression that people mostly found it to be an uplifting piece of news (something "impossible" just happened) and that it was kind of clear that it was not a viable cure for the masses iin the percievable future.

To me, telling people to stay away from "pseudo-scientific sensationalism" is a stupid thing to say. The reason why people do not do this is because they do not have the knowledge to separate sensationalism from the more pragmatic approach to the same story, or they are not aware of where they can get more balanced news. Telling them to do so without giving them any guidelines, or help in how to do so does not seem like it would help much.


I clearly stated that they should check out the original article before having opinions! You feel that is not enuff of a guideline?
"They drone drone drone , me win" - JangMinChul(Iron/oGsMC)
SushilS
Profile Joined November 2010
2115 Posts
December 15 2010 00:45 GMT
#10
Nice! So there are people who think for themselves...
iceiceice: I’m going to make this short; I am the one true tinker player.
Grend
Profile Blog Joined April 2010
1600 Posts
December 15 2010 01:00 GMT
#11
On December 15 2010 09:42 Firereaver wrote:
+ Show Spoiler +
On December 15 2010 09:12 Grend wrote:
I feel like youre overreacting. To me the interesting point of the story was the fact that someone had been cured of HIV. That has never happened before, thus it is newsworthy. I got the impression that people mostly found it to be an uplifting piece of news (something "impossible" just happened) and that it was kind of clear that it was not a viable cure for the masses iin the percievable future.

To me, telling people to stay away from "pseudo-scientific sensationalism" is a stupid thing to say. The reason why people do not do this is because they do not have the knowledge to separate sensationalism from the more pragmatic approach to the same story, or they are not aware of where they can get more balanced news. Telling them to do so without giving them any guidelines, or help in how to do so does not seem like it would help much.


I clearly stated that they should check out the original article before having opinions! You feel that is not enuff of a guideline?


No, that is not enuff in my opinion.
Staying away from "pseudo-scientific sensationalism" is a larger point of discussion than this one case, and just saying it the way you did just seemed pointless to me since I doubt that the reason do not "stay away from pseudo-scientific sensationalism" is that they love "pseudo-scientific sensationalism" and want to read all about it. To me, you seem a bit like a "pompous douche" when you tell people to do something they do not have the training or capabilities to do, while you yourself obviously have.

But that is just my opinion of course.
♞ Against the Wind - Bob Seger ♞
eshlow
Profile Joined June 2008
United States5210 Posts
December 15 2010 01:11 GMT
#12
It is very sensationalist.

Like I said in the other thread scientists HAVE KNOWN about HIV resistant people for at least a decade if not more. They've identified certain traits in humans that can make them resistant to HIV infection.

BUT they've made very little to zero progress producing anything similar to cure from it.

Obviously, bone marrow tranplant is NOT feasible for lots of people because of the intense chronic suffering one has to go through for a whole year in addition to the cost and high mortality rate.

Gene therapy still doesn't work (remember when they were saying that back in the '90s?). Were still not much closer to being able to do this type of stuff.


There's just nothing but a good story of a guy who had 2 diseases that somehow worked out for him. Great.

That doesn't help the rest of us at all, and IMO does not deserve the attention it's getting since it's not applicable to any type of cure whatsoever.
Overcoming Gravity: A Systematic Approach to Gymnastics and Bodyweight Strength
Firereaver
Profile Blog Joined October 2010
India1701 Posts
Last Edited: 2010-12-15 01:55:54
December 15 2010 01:13 GMT
#13
+ Show Spoiler +
On December 15 2010 10:00 Grend wrote:
Show nested quote +
On December 15 2010 09:42 Firereaver wrote:
+ Show Spoiler +
On December 15 2010 09:12 Grend wrote:
I feel like youre overreacting. To me the interesting point of the story was the fact that someone had been cured of HIV. That has never happened before, thus it is newsworthy. I got the impression that people mostly found it to be an uplifting piece of news (something "impossible" just happened) and that it was kind of clear that it was not a viable cure for the masses iin the percievable future.

To me, telling people to stay away from "pseudo-scientific sensationalism" is a stupid thing to say. The reason why people do not do this is because they do not have the knowledge to separate sensationalism from the more pragmatic approach to the same story, or they are not aware of where they can get more balanced news. Telling them to do so without giving them any guidelines, or help in how to do so does not seem like it would help much.


I clearly stated that they should check out the original article before having opinions! You feel that is not enuff of a guideline?


No, that is not enuff in my opinion.
Staying away from "pseudo-scientific sensationalism" is a larger point of discussion than this one case, and just saying it the way you did just seemed pointless to me since I doubt that the reason do not "stay away from pseudo-scientific sensationalism" is that they love "pseudo-scientific sensationalism" and want to read all about it. To me, you seem a bit like a "pompous douche" when you tell people to do something they do not have the training or capabilities to do, while you yourself obviously have.

But that is just my opinion of course.


Hmm..No troll I hope. The aim of this blogpost was not to vent on people who inadvertently succumb to the bane of sensationalism and I apologise if it came across as that. It was more to criticize the creators of the sensationalism in the first place and to heighten the senses of the people you call "laymen", so that they will be wary of what seems to be amazing esp. when there source is not from the original article.

Example: When the NASA Astrobiology conference news came up I wasn't pumped 'cos I felt it may not be such a big deal to see Arsenic just structurally incorporated into a bacterium. I therefore witheld my opinions on the matter, but then another TL user TBO(mad props!) kindly linked me to the original article and only once it confirmed that there was metabolic involvement did I become pumped for the discovery. I feel that that is a logical approach to anything that seems path-breaking especially in today's drama-craving world.
I'm sorry if I have fallen short of the lofty expectations you seem to have had for the guidelines I should have given.
"They drone drone drone , me win" - JangMinChul(Iron/oGsMC)
eshlow
Profile Joined June 2008
United States5210 Posts
December 15 2010 01:20 GMT
#14
I think the point firereaver is trying to make is that most people think this gives hope or is a step towards a cure.

Anyone with a background in science or who holds a science degree (especially in any molecular or biochemical science) knows that this guy being cured of HIV does not help in any way with the development of a cure.

It's a great story for the guy.

It does not help towards a cure.

The media is trying to make things out always to be greater than what they should be especially science articles. When you get the writer of a newpaper who doesn't understand what is going on in scientific articles or medical cases writing about it there is always the tendency to be prone to exaggerations and sensationalism.

It's pretty disgusting. Happens for biology, chemistry, physics, astronomy, math, or any other field where there is a lot of higher level learning or analysis involved.
Overcoming Gravity: A Systematic Approach to Gymnastics and Bodyweight Strength
Grend
Profile Blog Joined April 2010
1600 Posts
December 15 2010 01:26 GMT
#15
They are quite lofty. ^^
I understand now that we have slightly differing opinions but I think we basically agree.
♞ Against the Wind - Bob Seger ♞
intrigue
Profile Blog Joined November 2005
Washington, D.C9935 Posts
December 15 2010 01:48 GMT
#16
good post. agreed.
Moderatorsloppy little slug
PH
Profile Blog Joined June 2008
United States6173 Posts
December 15 2010 03:16 GMT
#17
I never an into the original article until I read OP, but thank you for posting, OP. Good post.
Hello
SushilS
Profile Joined November 2010
2115 Posts
December 15 2010 08:35 GMT
#18
OP examined and confirmed to be true! I asked my seniors and they agreed totally...
iceiceice: I’m going to make this short; I am the one true tinker player.
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