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Author Topic: Timothy Ray Brown: ‘Berlin Patient’ says ‘I’m cured of HIV’ (video)  (Read 5219 times)

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Offline Matty the Damned

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Good for him.

When they cure me, then I'll give a fuck.

MtD

Offline mecch

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Dr. Paul Volberding, a UCSF AIDS researcher said in the report that although Brown is a “fascinating story it’s not one that can be generalized. Bone marrow transplants carry a “real risk of mortality.” He said an unknown element of Brown’s treatment “allowed the virus apparently to be purged from his body.”

He said “it’s going to be a productive area to study.” 


________

I think this is a message of hope to all people living with HIV.

It comes with the downside that any number of people -- HIV+ and HIV- -- could misunderstand what to extrapolate from his cure. 

Well, that's just the nature of the beast.

 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Matty the Damned

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Dr. Paul Volberding, a UCSF AIDS researcher said in the report that although Brown is a “fascinating story it’s not one that can be generalized. Bone marrow transplants carry a “real risk of mortality.” He said an unknown element of Brown’s treatment “allowed the virus apparently to be purged from his body.”

He said “it’s going to be a productive area to study.” 


________

I think this is a message of hope to all people living with HIV.

It comes with the downside that any number of people -- HIV+ and HIV- -- could misunderstand what to extrapolate from his cure. 

Well, that's just the nature of the beast.


As usual what you're saying makes no fucking sense.

MtD

Offline Cliff

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Offline wolfter

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It comes with the downside that any number of people -- HIV+ and HIV- -- could misunderstand what to extrapolate from his cure. 


Are you basically saying that people might decipher this to mean that a cure is imminent? 

Many have reacted like this since the beginning.  They wondered if that next stride was the "magic bullet".  A single functional cure by itself is not empirical but does give hope for further research in that area.  I've learned to be hopeful over the years but having no expectations. 
productivity breeds content

Offline mecch

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Are you basically saying that people might decipher this to mean that a cure is imminent?  

Many have reacted like this since the beginning.  They wondered if that next stride was the "magic bullet".  A single functional cure by itself is not empirical but does give hope for further research in that area.  I've learned to be hopeful over the years but having no expectations.  

Yep you and I think alike on this issue.

In the other thread, people here say that people "out there" misunderstand what to learn from Magic Johnson.  (His ironic name doesn't help.)

Some people misunderstood the "1 pill a day" advance.

It's just the way it goes I guess.  

Pesonally I'm Happy for Magic. Happy for The Berlin Patient Cure. Happy for Atripla.  All can inspire hope in science against disease.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Matty the Damned

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Yep you and I think alike on this issue.

In the other thread, people here say that people "out there" misunderstand what to learn from Magic Johnson.  (His ironic name doesn't help.)

Some people misunderstood the "1 pill a day" advance.

It's just the way it goes I guess. 

Pesonally I'm Happy for Magic. Happy for The Berlin Patient Cure. Happy for Atripla.  All can inspire hope in science against disease.


/edited because I was too nice./

MtD
« Last Edit: May 18, 2011, 06:43:05 AM by Matty the Damned »

Offline sharkdiver

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Although I'm happy for him, the science is too far into the future to help people right now. After living with this disease for over 26 years now, I've learned to live day to day, week by week.

  Sorry for not being hyped but...
Hope doesn't pay for my medical insurance or pay for my drugs or solve the issues of the side effects I've had from the current drugs.

Offline Miss Philicia

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I enjoy eating bone marrow.
"I’ve slept with enough men to know that I’m not gay"

Offline sharkdiver

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I enjoy eating bone marrow.

osso bucco   my favorite

Offline wolfter

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I enjoy eating bone marrow.

smothered in cream of sum yung gai?
productivity breeds content

Offline Miss Philicia

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osso bucco   my favorite

***live***  I was introduced to the joys of Osso Bucco by a Park Avenue "blue hair" twenty years ago and still remember it all so clearly.

But just a plate of bones where you extract the marrow is perfect, spread on some toasted country bread. And don't forget that elongated marrow spoon.
"I’ve slept with enough men to know that I’m not gay"

Offline sharkdiver

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***live***  I was introduced to the joys of Osso Bucco by a Park Avenue "blue hair" twenty years ago and still remember it all so clearly.

But just a plate of bones where you extract the marrow is perfect, spread on some toasted country bread. And don't forget that elongated marrow spoon.

yes, if one must be refined, that long marrow spoon is a must.  But since I'm a rustic dago  sucking it out is one of my guilty pleasures

Offline denb45

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yes, if one must be refined, that long marrow spoon is a must.  But since I'm a rustic dago  sucking it out is one of my guilty pleasures

 :D I knew there was something I loved about you sharkie  :-* what's ole sac-town like these days, I kinda miss it   ???
« Last Edit: May 18, 2011, 01:17:37 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Miss Philicia

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I can't imagine not having that special spoon.
"I’ve slept with enough men to know that I’m not gay"

Offline John2038

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Proof of concept that has inspired new promising research eg ZFN CCR5/CXCR4
Without him we wont know if a cure is even possible. In more research have now a path to follow with know outcome.

Offline sam66

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  Thanks for the post John

    I enjoyed the vid.

    Wish him a long happy and healthy life
december 2007 diagnosed +ve ,

Offline Hellraiser

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/edited because I was too nice./

MtD

^  seriously?  Could you even type that with a straight face?

Offline Buckmark

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I can't imagine not having that special spoon.

A silver spoon?   ;)

Back to the topic at hand, it's hard to even imagine even uttering the words "I'm cured of HIV", having had HIV for virtually all of my adult life. 
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders


Offline Inchlingblue

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Sorry for the repeat post.

;)

Offline Ann

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Sorry for the repeat post.

;)

No problem, I think your link is busted anyway But I didn't realise until after I merged.  :-*
« Last Edit: May 18, 2011, 09:01:16 PM by Ann »
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Offline AlanBama

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Hey may be cured, but is definitely not a "well person".   In the POZ article he stated that he is having trouble finding a doctor; he HAD cancer, and he HAD AIDS, so does he go to an oncologist?  An Infectious Disease Specialist?  I'm sure the poor guy is very confused about it all, and just trying to figure it out.

I wouldn't trade my health status for his, even though he is 'cured' of AIDS.  I hope he continues to do well, gain some weight, and that his health keeps improving.

Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline denb45

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I wouldn't trade my health status for his, even though he is 'cured' of AIDS.  I hope he continues to do well, gain some weight, and that his health keeps improving.

Alan

I wouldn't as well, but if cured of THIS @ 54 yrs of age and 23 yrs of teh AIDS and everything that go's along with it, I don't think that would help me much  ???
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Inchlingblue

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I'm curious about his insurance coverage. In Germany he received health care from the government, based on some accounts I've read. Now he's in California. I guess health care facilities see him for free because of his unique situation, for research?

I know I can't just pickup and move anywhere I want due to concerns about accessing health care.

Offline leatherman

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I'm curious about his insurance coverage.
yes, the finances of how he got to Germany, got treated, got rehab, and returned to the US for continuing care would be an interesting side story. I'm sure the tab for all his health care is pretty high, not to mention his travel and housing costs. Although he may not have had to pay for all the experimental treatments, some hospital and healthcare system had to incur the costs.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline hope_for_a_cure

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An intriguing anomaly no doubt but not a viable option (as is obvious).  I as well hope this man continues to do well and think its great that he has reverted back to a negative status. 

You are correct Mikie, the costs associated with this endeavor would make for an interesting side story. 

Offline Rev. Moon

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Good for him.

When they cure me, then I'll give a fuck.

MtD

I'm kinda tired of this story already. Even my ID doc thinks that there is far too much hype around this man and a "cure" that is not viable for errbody. 

Till they find something to quiet all the Curesters® in the research forum, and which allows me to put "negative" on my Mancunt profile, please color me uninterested.
"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Offline eric48

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Hi,

I have posted links to the medical record written by his doctor here:

Berlin patient 's doctor medical account of the case

http://forums.poz.com/index.php?topic=37942.0

Enjoy

Eric

Offline Inchlingblue

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yes, the finances of how he got to Germany, got treated, got rehab, and returned to the US for continuing care would be an interesting side story. I'm sure the tab for all his health care is pretty high, not to mention his travel and housing costs. Although he may not have had to pay for all the experimental treatments, some hospital and healthcare system had to incur the costs.

I read that while he was living in Germany he was covered by their national system. The article mentioned how his doctor had to screen over 60 candidates to find someone who was both a match as well as had the delta-32 mutation. The point being that in the US it would never have happened because insurance companies only allow up to about 10 donor screenings, maybe a few more if the doctor really makes a case for it but certainly not anywhere near 60.

As far as what his coverage is here that's what I'm curious about.

Offline mecch

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Those German doctors were trying to prove a idea and they did and bravo, everyone wins.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline eric48

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As discusses the reason why it my be difficult to repeat the procedure in a near future his doctor referes mostly to stats.

For someone who would need a procedure (BM transplant) they have to check for HTLA (or whatever, I do not have the article at hand) and they have international data banks to look potential donors. The oddes to find a compatible donor is 90-95% (For this HLA compatatibility)

Then you have to find a delta32 donor who had inherited this from both parents. The odds are 1 %

The stats are not favorable but given the number of Hivers and donors, this is not the major issues that he sees...

What he says is that potential donors are systematically screened for HLA sorting before database entry. BUT noone has ever cared (execpt 2 minors US databanks) testing the donors systematically for the Delta32.

While this test may not be that costly, it has not been (until today) part of the routing testing.

Which is the reason why, despite requests from potential patients/hospitals thay have sofar not been able to identify one other patient that would be a good potential. They remain on the look out.

So, while the funding for the initial trial may have played a role, there are many people/organisations who would be ready to pay those funds, so funding is not the primary issue. The primary issue, as I understood it, is to get delta32 testing as full part of routine donor testing so that a database can be built up.

(I hope, the above is clear enough..., I am not at the office and I do not have the original paper with me...)

Hope this helps

Eric

Offline Tim Horn

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Eric:

With all due respect, but I think many folks here are seeing the "plausibility" issue through a very different lens.

Yes, we've now been shown that HIV can be eradicated from the human body -- but only through one of the most dangerous, traumatic and costly procedures known to medical science.

What's needed now, at least the way I see it, isn't an international effort to amass HLA and CCR5-delta 32 information on stem cell donors, but rather find easier (e.g. ZFN gene therapy of autologous stem cells), safer (somehow circumventing the need for high-risk ablation therapy) and cheaper methods that can be employed universally.

The trick is to find a way to kill the rat without potentially burning down the house.

Offline eric48

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What's needed now, at least the way I see it, isn't an international effort to amass HLA and CCR5-delta 32 information on stem cell donors, but rather find easier (e.g. ZFN gene therapy of autologous stem cells), safer (somehow circumventing the need for high-risk ablation therapy) and cheaper methods that can be employed universally.

The trick is to find a way to kill the rat without potentially burning down the house.

No offense at all as this exactly the conclusion that Dr Gero Hütter himself is coming to has he states his is article:

...Therefore, the combination of stem cell and gene-based therapies has been proposed as a long-lived alternative to antiretroviral therapy.
The case of the first successful allogeneic HSCT with CCR5-depleted stem cells in a patient with HIV infection has initiated a run towards the development of new gene therapy strategies against this disease. It is not unlikely that during the next decades, HIV treatment will enter a new level of efficiency and will move us one step closer towards a cure...

He is certainly not advocating that the procedure should be repeated, but simply explains why it has not been repeated/duplicated so far. And funding is not listed as one of the causes.

Some in this forum tend to believe that the Berlin patient case is a 'unique' case because Germany offers extended health cost coverage. While this may have played a role in this initial case, the matter of funding and or coverage is (most likely) not the reason why the case remains unique (has not been duplicated yet)

While Timothy Ray Brown' testimony about his experience is crucial and moving, and he might be seen as a hero or milestone in the history of the epidemic, it is his Doctor who should/will deserve a Nobel prize.

A lot of (deserved) attention has been given to  Timothy's testimony, but very little to what his Doctor, who DID make a a difference in the history of the epidemic, has too say.

It is very unfortunate that he has reported the case and his current thoughts about OPEN QUESTIONS
Why there is no escape of X4 quasispecies?
Is there something special about this patient?
What was the role of the transplantation procedure?
Is the patient functionally cured?
Is the patient sterilizing cured?
Is there a Graft vs. HIV effect?
Why was this procedure not repeated in other patients? Etc.

in an article that is NOT FREE . The article is only $30 and is yet a great way to spend $30.

Dr Gero Hütter' account and line of thoughts is much more vivid than all the second hand or third hand info we have been getting thus far.

Like many, I welcome Timothy's testimony. Coming forward like this way not have been easy.

in the same fashion, I would think that many of us would benefit from Dr Gero Hütter coming forward as well and offer his testimony and reflexions for the future. (and , in a way, he has, ... but not freely available)

A paper by Dr Gero Hütter himself would be a great addition to this very informative site !

For me it would be as easy as a copy and paste here, but, unfortunately unlawful

A good number of questions that appear from time to time in this forum would simply find an first hand, educated, authoritative answer.

May be we should ask Dr Hutter for permission ?

I merely wanted to point to this article as a necessary companion to the video that this thread was initially pointing to.

Cheers

Eric











 


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