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Author Topic: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS  (Read 11233 times)

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Offline Inchlingblue

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Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« on: December 11, 2010, 11:04:46 AM »
Excellent article by Tim Horn:

Berlin Patient Follow-Up 'Strongly Suggests' HIV Cure

LINK:

http://www.aidsmeds.com/articles/hiv_berlin_cure_1667_19563.shtml





He's lucky he's in Germany because in the US, even if he had private insurance, the screening process for finding the suitable donor who was both a good match and in addition had the CCR5 deletion would not have been approved/covered. Thank heaven for good ol' German socialized medicine.


« Last Edit: December 11, 2010, 11:38:36 AM by Inchlingblue »

Offline Rev. Moon

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #1 on: December 11, 2010, 02:55:00 PM »
Good news for the guy.

Just curious, not sure if it has been mentioned before, for how long did this patient live with HIV?

Ps./ It just crossed my mind... I seriously hope that this individual, thinking that he is now "immune" to HIV, doesn't decide to go on some sort of bareback binge (especially since he resides in the land of kinky queens).  It'd be a pity. 
"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 Tim Horn

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #2 on: December 11, 2010, 03:05:59 PM »
Just curious, not sure if it has been mentioned before, for how long did this patient live with HIV?

According to the original NEJM report, Brown was diagnosed with HIV "at least ten years prior" to the 2007 stem cell transplant.

He's lucky he's in Germany because in the US, even if he had private insurance, the screening process for finding the suitable donor who was both a good match and in addition had the CCR5 deletion would not have been approved/covered. Thank heaven for good ol' German socialized medicine.

Sangamo Biosciences is currently looking to bypass the donor issue with the development of a gene modification technique involving the use of zinc finger nucleases to alter autologous (self) stem cells to produce CD4 cells without the CCR5 coreceptor. There's a Phase I study, involving individuals with relapsing lymphoma and leukemia, currently under way in California.

The big question is, can we achieve anything like this without the need for brutal chemotherapy and radiation conditioning?

Tim

Offline skeebo1969

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #3 on: December 11, 2010, 03:08:36 PM »
Ps./ It just crossed my mind... I seriously hope that this individual, thinking that he is now "immune" to HIV, doesn't decide to go on some sort of bareback binge (especially since he resides in the land of kinky queens).  It'd be a pity. 

Hopefully his great looks will get in the way of that.... kinda reminds me of Brad Pitt a little bit.
I despise the song Love is in the Air, you should too.

Offline Inchlingblue

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #4 on: December 11, 2010, 03:14:47 PM »
Good news for the guy.

Just curious, not sure if it has been mentioned before, for how long did this patient live with HIV?

Ps./ It just crossed my mind... I seriously hope that this individual, thinking that he is now "immune" to HIV, doesn't decide to go on some sort of bareback binge (especially since he resides in the land of kinky queens).  It'd be a pity.  

I believe he became positive around 1995 (according to the German article linked in Tim's piece).

He's as close to immune as one can get to the strain of HIV that attaches to the CCR5 co-receptor, since his new immune system lacks this co-receptor. He's not immune to CXCR4-tropic HIV though.

One hard-to-explain aspect of his cure is that previous to his treatment he harbored dual-tropic HIV as well as CCR5-tropic and probably CXCR4-tropic and yet he was still able to get rid of the dual-tropic and CXCR4 HIV, probably through the process of ablation.  The transplant would not have worked against CXCR4-tropic or dual-tropic HIV so the reservoirs he had with these seem to have been destroyed with the chemo.

After all this it would be kind of ironic if he became infected again. Alanis Morissette would have to add new lyrics to her song.

Sangamo Biosciences is currently looking to bypass the donor issue with the development of a gene modification technique involving the use of zinc finger nucleases to alter autologous (self) stem cells to produce CD4 cells without the CCR5 coreceptor. There's a Phase I study, involving individuals with relapsing lymphoma and leukemia, currently under way in California.


Yes, very exciting research; also John Zaia (City of Hope) and Paula Cannon (USC).

What I was trying to get at is that this groundbreaking achievement could not have happened here in the good ol' USA. Dr. Hutter had to screen something like 61 donors before he found the right match that also had delta-32. Here in the US most insurance companies allow the screening of 5 maybe 10 donors for stem cell or bone marrow transplants before they start putting on the brakes. Not to mention that the CCR5-aspect of this would have been considered "experimental" and they probably would not have allowed it at all.

I believe there's a movement to screen donors for delta-32 initially when they first go into the donor database so that the information is readily available.


« Last Edit: December 11, 2010, 07:08:25 PM by Inchlingblue »

Offline Rev. Moon

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #5 on: December 11, 2010, 03:17:11 PM »
According to the original NEJM report, Brown was diagnosed with HIV "at least ten years prior" to the 2007 stem cell transplant.


Thanks, Tim.  Interesting to know that he lived with the virus for a fairly long time period (just thinking of reservoirs, damage caused by whatever older meds that he may have taken, etc).
 


Hopefully his great looks will get in the way of that.... kinda reminds me of Brad Pitt a little bit.

Chile, I was thinking more on the side of Edilson Nascimento.  Seriously though, some of the biggest party girls that I know tend to seriously lack in the looks department.  Poor self esteem issues are usually to blame for the HIV status of some bottom gals.
"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 Inchlingblue

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #6 on: December 11, 2010, 03:53:46 PM »
If I had HIV since 1995 and later leukemia and through stem cell transplants was brought to the brink of death not once but twice, I can only wish I looked as good as Mr. Brown. Just saying.
« Last Edit: December 11, 2010, 07:11:22 PM by Inchlingblue »

Offline leatherman

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #7 on: December 11, 2010, 04:00:21 PM »
The big question is, can we achieve anything like this without the need for brutal chemotherapy and radiation conditioning?
much less having leukemia in the first place ;)

although I think this is an interesting case, I still think of it being an abnormality, and not so much as a "cure". I wonder how much having leukemia affected all of this treatment. Rather than saying this patient was "cured" of HIV, isn't it really more accurate to say that the patient had HIV irradicated from his system? I doubt many people could survive leukemia, radiation, chemo, and stem cell transplant just to be "cured" of HIV.
leatherman (aka mIkIE)


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Offline Rev. Moon

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #8 on: December 11, 2010, 04:03:47 PM »
It's a matter of semantics.  If (and I am a big "if" kinda person when it comes to this matter) there is ever a cure for HIV, this fella will still be named in the books as the first person to ever become free of this virus.
"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 leatherman

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #9 on: December 11, 2010, 04:07:49 PM »
this fella will still be named in the books as the first person to ever become free of this virus.
oh of course. ;) and with that brutal of a "cure", he'll probably be the only person to ever be cured by this method. He was very lucky to have survived all the odds (I am not a gambler at all and shudder at the odds this guy played against. I would never had taken these risks.); but statiscally I doubt the next person will be able to survive each of these steps.

but it sounds good to say he was "cured" (even if that is a little misleading and makes HIV even less of a big deal now that there is a cure  ;) )
leatherman (aka mIkIE)


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

Offline Inchlingblue

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #10 on: December 11, 2010, 04:11:46 PM »
much less having leukemia in the first place ;)

although I think this is an interesting case, I still think of it being an abnormality, and not so much as a "cure". I wonder how much having leukemia affected all of this treatment. Rather than saying this patient was "cured" of HIV, isn't it really more accurate to say that the patient had HIV irradicated from his system? I doubt many people could survive leukemia, radiation, chemo, and stem cell transplant just to be "cured" of HIV.

The importance of the case is that it serves as a proof of principle showing that it's possible to re-jig the immune system. The challenge, as Tim says, is to see if it's possible to reprogram it by introducing CCR5-deficient cells but without the toxic chemo and radiation. 

oh of course. ;) and with that brutal of a "cure", he'll probably be the only person to ever be cured by this method. He was very lucky to have survived all the odds (I am not a gambler at all and shudder at the odds this guy played against. I would never had taken these risks.); but statiscally I doubt the next person will be able to survive each of these steps.

The treatment for his leukemia was a stem cell transplant. He would have died for sure without it. His doctor had a stroke of genius when he figured, since this man needs a translpant anyway and he has HIV, why not use a donor that lacks the CCR5 co-receptor just to see if maybe he would also be cured of HIV? It ended up working. His doctor is not even an HIV specialist.
« Last Edit: December 11, 2010, 04:27:11 PM by Inchlingblue »

Offline Rev. Moon

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #11 on: December 11, 2010, 04:12:43 PM »
it sounds good to say he was "cured" (even if that is a little misleading and makes HIV even less of a big deal now that there is a cure  ;)

Very valid point.  I have run into a couple of ign'ant heads who stated "don't they have like a cure of AIDS in like Germany and stuff?  Those Europeenz always have better medication than us."  It adds a little more to the "no big deal" mentality.
"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 leatherman

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #12 on: December 11, 2010, 04:32:58 PM »
Very valid point.
and that's why I quibbled a little about saying "cure" rather than "irradicated". When you mix the headlines of "Berlin Patient Follow-up 'Strongly Suggest' HIV Cure" and "HIV drugs can prevent infection‎" (Windy City Times), it's just going to make it harder to push prevention education, much less get recalcitrant politicians to believe ADAP truly needs adequate funding.

I think it's a lot more worrisome about what the general public sees and believes about HIV from newspaper and internet headlines than newbies, in an HIV support forum, saying that taking meds is no big deal.  ;)

However I don't think this misunderstanding makes anyone ignorant per se. Many people scan headlines to learn the main talking points of the day. Why would someone who doesn't have HIV really care about the details in the article? (To be honest, I don't read the articles about breast cancer or diabetes, because I don't have either of those issues.) It's not like it's about taxes, which we all pay. These headlines insinuate that a disease - which only a minority of people in the US have - has basically been cured, and is easily prevented with a pill. ::)
leatherman (aka mIkIE)


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

Offline Miss Philicia

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #13 on: December 11, 2010, 04:36:00 PM »
maybe we should keep Timothy a secret
"Iíve slept with enough men to know that Iím not gay"

Offline leese43

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #14 on: December 11, 2010, 04:38:35 PM »
maybe we should keep Timothy a secret

 ::) ;) ;D :-*
Oct 04 - Neg
Aug 05 - infected
Oct 05 - cd4 780, vl 60k
Apr 08 - cd4 430, vl 243
Jul 08 - cd4 550, vl 896
Nov 08 - cd4 730, vl 1.8k
May 09 - cd4 590, vl 1.5k
Sep 09 - cd4 460 vl 34k
Dec 09 - cd4 470 vl 42k
April 10 - cd4 430 vl 88.5k
July 10 - cd4 330 vl 118k
Aug 10 - started reyataz/truvada/norvir
Aug 10 - cd4 380 vl 4k (12 days after starting meds :))
Sep 10 - cd4 520 vl 1.5k
Oct 10 - cd4 590 vl 44
Jan 11 -cd4 610 vl <40 cd4% 50
May 11 - cd4 780 vl UD

Offline Miss Philicia

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #15 on: December 11, 2010, 04:39:09 PM »
"Iíve slept with enough men to know that Iím not gay"

Offline leese43

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #16 on: December 11, 2010, 04:42:59 PM »
FOUR emoticons!?!?  How dare you.

All I have to say to that is...  :P
Oct 04 - Neg
Aug 05 - infected
Oct 05 - cd4 780, vl 60k
Apr 08 - cd4 430, vl 243
Jul 08 - cd4 550, vl 896
Nov 08 - cd4 730, vl 1.8k
May 09 - cd4 590, vl 1.5k
Sep 09 - cd4 460 vl 34k
Dec 09 - cd4 470 vl 42k
April 10 - cd4 430 vl 88.5k
July 10 - cd4 330 vl 118k
Aug 10 - started reyataz/truvada/norvir
Aug 10 - cd4 380 vl 4k (12 days after starting meds :))
Sep 10 - cd4 520 vl 1.5k
Oct 10 - cd4 590 vl 44
Jan 11 -cd4 610 vl <40 cd4% 50
May 11 - cd4 780 vl UD

Offline wtfimpoz

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #17 on: December 11, 2010, 05:01:25 PM »
One hard-to-explain aspect of his cure is that previous to his treatment he harbored dual-tropic HIV, CCR5 as well as CXCR4 and yet he was still able to get rid of the CXCR4 HIV, probably through the process of ablation.  The transplant would not have worked against CXCR4-tropic HIV so the reservoirs he had with CXCR4 seem to have been destroyed with the chemo.

How do you know what your tropism is?  I don't believe I've ever had this test performed. 
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline bmancanfly

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #18 on: December 11, 2010, 05:04:07 PM »
Is there any way to know for sure if it was the stem cells that "cured" him of HIV or whether it was the chemo and radiation?

"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

Offline Inchlingblue

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #19 on: December 11, 2010, 06:40:51 PM »
How do you know what your tropism is?  I don't believe I've ever had this test performed.  

It can vary by individual but generally speaking, during the first few years of infection most people have only CCR5-tropic virus and eventually CXCR4 and/or dual-tropic shows up (in the absence of meds). There's a test called a trofile assay that can be performed. In order to go on entry inhibitors such as Selzentry one has to have this test first in order to make sure it'll work, since the drug inhibits entry via CCR5.

Is there any way to know for sure if it was the stem cells that "cured" him of HIV or whether it was the chemo and radiation?

It seems that in this case it was probably both the chemo/radiation as well as the fact that his donor stem cells were deficient in CCR5, preventing CCR5-tropic HIV from entering. He was essentially given a new immune system.

It's possible that this success could be repeated by giving people enough new CCR5-deficient cells that have been reprogrammed either by ZFN or other means (gene therapy), without having to also do chemo/radiation and without relying on a donor. The idea being that the new CCR5-deficient cells will proliferate and become the dominant ones. We'll see how the studies pan out.

 
« Last Edit: December 11, 2010, 07:13:54 PM by Inchlingblue »

Offline Gio

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #20 on: December 11, 2010, 06:44:36 PM »
I actually wonder how early was he diagnosed..  Since there is a lot of debate concerning when it is best to start meds.    I am all new to this so forgive my ignorance in the subject matter...  And as far as being no big deal, oh it is..  For the moment i have a job and insurance but in this economy my only stress is losing both and oh yeah the insurance copay is hitting my wallet like its an ATM machine.... but overall still smiling and laughing no other choice!   :D ;D

Offline skeebo1969

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #21 on: December 11, 2010, 09:08:24 PM »




      It just dawned on me....  If Timothy Ray Brown was a member of the forums would he still be allowed to post in Living With?
I despise the song Love is in the Air, you should too.

Offline Miss Philicia

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #22 on: December 11, 2010, 10:28:57 PM »



      It just dawned on me....  If Timothy Ray Brown was a member of the forums would he still be allowed to post in Living With?

no
"Iíve slept with enough men to know that Iím not gay"

Offline LACboi

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #23 on: December 11, 2010, 11:00:58 PM »
The only thing I see wrong with this is it would be years before thy could get it approved through the FDA, then the cost would be outrageous and most insurances would call it experimental and not cover it. Sucks to  be an American sometimes.

Offline wtfimpoz

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #24 on: December 11, 2010, 11:02:43 PM »
It can vary by individual but generally speaking, during the first few years of infection most people have only CCR5-tropic virus and eventually CXCR4 and/or dual-tropic shows up (in the absence of meds). There's a test called a trofile assay that can be performed. In order to go on entry inhibitors such as Selzentry one has to have this test first in order to make sure it'll work, since the drug inhibits entry via CCR5.
 


so if the new therapies eliminate ccr5, would this therapy be of any use to someone treated for years who has a proliferation of CXCR4?  And how do these therapies benefit us in regards to the direct infection of the brain?
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline wtfimpoz

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #25 on: December 11, 2010, 11:07:02 PM »
The only thing I see wrong with this is it would be years before thy could get it approved through the FDA, then the cost would be outrageous and most insurances would call it experimental and not cover it. Sucks to  be an American sometimes.

I've wondered how were going to handle it in the states too.  This therapy seems more promising than the interleukin 7 trials to me.  Get your protest boots ready people...
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Online tednlou2

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #26 on: December 12, 2010, 02:08:03 AM »



      It just dawned on me....  If Timothy Ray Brown was a member of the forums would he still be allowed to post in Living With?

One day, will we have to have an exit interview here like employers do where we turn over our badges and computer access?  Or, we'll have to have a forum called "Formerly Poz" or something like that?

Offline Inchlingblue

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #27 on: December 12, 2010, 09:30:55 AM »
The only thing I see wrong with this is it would be years before thy could get it approved through the FDA, then the cost would be outrageous and most insurances would call it experimental and not cover it. Sucks to  be an American sometimes.

Even though stem cell transplants have gotten less dangerous through the years, it's still a very risky procedure that carries a high mortality rate so it's never been a serious consideration that it would be an option for the HIV population at large.

As mentioned earlier, there are studies involving gene therapy that should be able to provide CCR5-deficient cells but without the dangerous chemo and radiation involved in traditional stem cell transplants.

 
 

Offline J.R.E.

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #28 on: December 12, 2010, 10:24:23 AM »



      It just dawned on me....  If Timothy Ray Brown was a member of the forums would he still be allowed to post in Living With?


It wouldn't bother me if he was to post in the living with HIV forum. ( if he was a member of the forums.)  He had ten years of living with HIV prior to 2007, He's got quite a story to tell. 

Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline Realist

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23/02/10 Tests confirmed
25/02/10 13100 220 24%
12/03/10 19800 372 19%
26/03/10 Atripla
30/04/10 58 286 23%
28/05/10 45 222 21%
25/06/10 UD 301 23%
24/09/10 UD 283 22%
01/12/10 UD 319 23%
11/03/11 UD 293 28%
10/06/11 UD 423 24%
23/08/11 UD 389 26%
28/02/11 UD 315 34%

I blogged it all http://notdownnotout.blogspot.com

Offline Tim Horn

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #30 on: December 13, 2010, 08:51:06 AM »
Realist:

I'm not surprised at all, actually. For starters, there hasn't been a lot of P.R. surrounding the update in Blood, unlike the publication of the original report in the New England Journal of Medicine. Also keep in mind that Brown's situation was widely reported back in 2008, after his case was presented at the Conference on Retroviruses and Opportunistic Infections, and a lot of media outlets might not appreciate why the follow-up report in Blood is so important.

As for the "human interest" aspect of this story -- the experience of Timothy Ray Brown -- I don't think he's particularly interested in becoming a media star. I was fortunate enough to speak with Mr. Brown this past summer and it really seems as if he simply wants to move on with his life after what can only be described as an extremely challenging couple of years. In turn, I don't expect that we'll see a flood of mainstream media reports in the next few weeks. given that Brown likely isn't granting many (if any) additional interviews.

Tim

 

Offline Tim Horn

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #31 on: December 13, 2010, 12:35:55 PM »
aidsmap has also reported on Brown's "coming out" and the latest follow-up data:

http://aidsmap.com/page/1577949/#item1577952


Offline Realist

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #32 on: December 13, 2010, 12:55:57 PM »
Realist:

I'm not surprised at all, actually. For starters, there hasn't been a lot of P.R. surrounding the update in Blood, unlike the publication of the original report in the New England Journal of Medicine. Also keep in mind that Brown's situation was widely reported back in 2008, after his case was presented at the Conference on Retroviruses and Opportunistic Infections, and a lot of media outlets might not appreciate why the follow-up report in Blood is so important.

As for the "human interest" aspect of this story -- the experience of Timothy Ray Brown -- I don't think he's particularly interested in becoming a media star. I was fortunate enough to speak with Mr. Brown this past summer and it really seems as if he simply wants to move on with his life after what can only be described as an extremely challenging couple of years. In turn, I don't expect that we'll see a flood of mainstream media reports in the next few weeks. given that Brown likely isn't granting many (if any) additional interviews.

Tim

 

Tim,

Totally understand this on "human interest" aspect. I guess in general the follow-up isn't understood as easily in terms of importance as the original story which of course was more widely reported. I don't blame the guy for not wanting to become a media starlet (I wouldn't want to either), it just seems curious that the "news" is limited at this point.
23/02/10 Tests confirmed
25/02/10 13100 220 24%
12/03/10 19800 372 19%
26/03/10 Atripla
30/04/10 58 286 23%
28/05/10 45 222 21%
25/06/10 UD 301 23%
24/09/10 UD 283 22%
01/12/10 UD 319 23%
11/03/11 UD 293 28%
10/06/11 UD 423 24%
23/08/11 UD 389 26%
28/02/11 UD 315 34%

I blogged it all http://notdownnotout.blogspot.com

Offline leatherman

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #33 on: December 13, 2010, 01:22:04 PM »
http://aidsmap.com/page/1577949/#item1577952
eek. :o that was probably the "scariest" story I read about the man and his situation to date

Quote
acute myeloid leukaemia...
experienced a relapse in 2007...
receive a second stem cell transplant 13 days after the first one, due to a further relapse of leukaemia....
The patient continued to receive immunosuppressive treatment to prevent rejection for 38 months, and at 5, 24 and 29 months post-transplant colon biopsies were taken...
Seventeen months after the transplant the patient developed a neurological condition, which required a brain biopsy and lumbar puncture to sample the cerebrospinal fluid for diagnostic purposes.
...
The neurological problem led to temporary blindness and memory problems. Brown is still undergoing physiotherapy to help restore his coordination and gait, as well as speech therapy.
...
Friends have noticed a personality change too...

On being asked if it would have been better to live with HIV than to have beaten it in this way he says ďPerhaps. Perhaps it would have been better, but I donít ask those sorts of questions anymore.Ē
hopefully the gene therapy will pan out because this cure seems to a hard-fought one and one frought with just way too many complications - much less all the chances to die along the way.

Bravo to Mr. Brown for going through all these extreme experiences, for surviving, for suffering through so much, and for continuing to struggle with issues so that he could be cured of HIV. I can only imagine his fortitude, determination, attitude and endurance. ;)
leatherman (aka mIkIE)


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

Offline PeteNYNJ

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #34 on: December 13, 2010, 02:17:43 PM »



      It just dawned on me....  If Timothy Ray Brown was a member of the forums would he still be allowed to post in Living With?

He would demand his own seperate forum "Cured of HIV".  It would be him posting to himself :)

Offline leatherman

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #35 on: December 13, 2010, 03:36:58 PM »
It would be him posting to himself :)
I'm sure a couple of denialists/alternative therapy people could sneak in to chat with him once in a while.  :D
leatherman (aka mIkIE)


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

Offline Inchlingblue

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #36 on: December 13, 2010, 05:36:21 PM »
The article says he's considering moving to Barcelona or San Francisco. If I were him, I'd stay where I was guaranteed free (top notch) health care.  

Maybe he's independently wealthy (which I doubt) but it always amazes me when I hear things like this, i.e. people with HIV or other chronic conditions (blithely?) deciding to move somewhere or another. I for one can't just pack up and move without serious considerations about how I'd be able to manage to keep health care coverage, which I have through my current job.

Granted, he doesn't have HIV anymore but it does sound as if he'll be needing lots of follow up.

If he had been living in the US throughout his ordeal with HIV and leukemia, we would not be talking about him as the first person cured of HIV. To be blunt, he would more than likely be dead.

But, hey, if he can move to Barcelona or San Francisco and still get free health care more power to him.  Good luck with that.

Offline wtfimpoz

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #37 on: December 13, 2010, 06:05:05 PM »
I've been wondering that too.  My understanding is that most European countries require you to show proof of insurance before you can work there.
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline Ann

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #38 on: December 13, 2010, 06:23:22 PM »
I'm sure a couple of denialists/alternative therapy people could sneak in to chat with him once in a while.  :D

Over my cured virus!
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Online tednlou2

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #39 on: December 14, 2010, 01:42:47 AM »
I would love to see an interview with Mr. Brown.  I contacted a producer for the "Today Show" that I had contact with to suggest the story.  Obviously, a newspaper like the New York Times or Time magazine would do a better job.  While I believe Matt does a good job on interviews, they have so many Lindsay or Octomom stories to do.  60 Minutes would do a better job as far as TV goes.   


Offline Inchlingblue

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #40 on: December 14, 2010, 01:56:29 PM »
Huff Po is weighing in:

http://www.huffingtonpost.com/2010/12/14/hiv-cure-berlin-patient_n_796521.html

As Mikey was predicting, there are people on Twitter who think this means that a cure for HIV has been found. Oy Vay.
« Last Edit: December 14, 2010, 02:14:22 PM by Inchlingblue »

Offline skeebo1969

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #41 on: December 14, 2010, 02:29:10 PM »
Huff Po is weighing in:

http://www.huffingtonpost.com/2010/12/14/hiv-cure-berlin-patient_n_796521.html

As Mikey was predicting, there are people on Twitter who think this means that a cure for HIV has been found. Oy Vay.

If I get cured I'm not telling you guys. :)
I despise the song Love is in the Air, you should too.

Offline leatherman

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #42 on: December 14, 2010, 06:44:03 PM »
http://www.huffingtonpost.com/2010/12/14/hiv-cure-berlin-patient_n_796521.html
that article linked to another one about the media and HIV that had some interesting/good suggestions. Too bad it's the editors not us that could implement these changes - although letter-writing could help bring about the change ;)
Tips for the Media on How to Stop Screwing Up HIV/AIDS Coverage
leatherman (aka mIkIE)


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

Offline smiteler

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #43 on: December 14, 2010, 09:23:51 PM »
, it just seems curious that the "news" is limited at this point.

that won't last long..
its on msnbc right now and
i bet its somewhere on the tv news within hours from now

Offline WillyWump

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #44 on: December 14, 2010, 10:02:11 PM »
Tips for the Media on How to Stop Screwing Up HIV/AIDS Coverage

Right on.

Try Normalizing HIV; It's Not That Hard: HIV has always been the "cheese that stands alone" -- it's even classified separately from other sexually transmitted diseases. One way to help destigmatize the disease is to include a discussion about HIV into stories in which HIV is simply a fact to be noted, not the focus of the entire piece. For example, in a feature about people struggling to pay for their health care or the difficulties of adhering to daily medications, why not include a person living with HIV as one of the interviewees? Or in a story about Mother's Day, or Valentine's Day, or Veteran's Day, why not include the perspective of an HIV-positive person? HIV doesn't always have to exist outside the box.
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline leatherman

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #45 on: December 14, 2010, 10:21:03 PM »
it's even classified separately from other sexually transmitted diseases. One way to help destigmatize the disease is to include a discussion about HIV into stories in which HIV is simply a fact to be noted, not the focus of the entire piece.
sadly some of the way that HIV was treated from the beginning (by patients, doctors, support services, etc, with the anonymous testing, having to give specific permission to be tested for hiv, ASOs/clinics that only treat HIV, etc) that made that cheese stand alone.
leatherman (aka mIkIE)


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

Offline leatherman

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #46 on: December 14, 2010, 10:32:44 PM »
Over at MSNBC, their article is worded much more judiciously......

the headline reads:
"Cure for HIV claimed, but not yet proven
Bone marrow transplant credited with wiping out German man's infection"

the article ends with this caveat:
Quote
"One can't really claim this is a cure yet," he said.

Pass it on: Researchers' claim that a man has been cured of HIV are exciting and suggestive, but not conclusive.
http://www.msnbc.msn.com/id/40666443/ns/health-aids/


....than say the wording in this other article:

An End To AIDS? Stem Cell Transplant Cures Man With HIV!!!!!!
Quote
2010 is the year of HIV breakthroughs!!

A man who is referred to as the "Berlin Patient" received a stem cell transplant in 2007 as part of a treatment for leukemia, and just recently his doctors published a report saying that extensive testing "strongly suggest that cure of HIV infection has been achieved."

This is amazing! Just recently doctors reported that they developed a preventative drug that can reduce the risk of contracting HIV by 73%.

It will take a while for either of these procedures to come in full force, but it certainly gives a glimmer of hope to the 33 million people in the world who live with HIV!
http://fitperez.com/2010-12-14-stem-cell-transplant-cures-man-with-hiv

as I wrote to another member, my sister-in-law saw the second article and wanted to know if because I have medicare AND medicaid, but live in SC, am I going to be eligible for this "cure". She continued that although she was sad that Randy and Jim didn't live to see this day, she was so glad that I lived to see the cure.  ::) Oy vay is right!
leatherman (aka mIkIE)


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

Offline WillyWump

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #47 on: December 14, 2010, 10:40:34 PM »
she was so glad that I lived to see the cure.  

Lol! Congrats on your cure Leather!

-W
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline wtfimpoz

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #48 on: December 14, 2010, 10:47:39 PM »
Oh gawd, I just surfed from one of those links to another article on msnbc article which discusses "the new chemical condom Truvado"  ::)

EDIT:  Sorry to interject into an otherwise meaningful and insightful conversation. 
« Last Edit: December 14, 2010, 10:57:39 PM by wtfimpoz »
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline mecch

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Re: Timothy Ray Brown: The First Person To Be Cured of HIV/AIDS
« Reply #49 on: December 14, 2010, 11:35:30 PM »
Isn't this "cure" old news? I thought he was well known for awhile. Certainly here in Switzerland.
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

 


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