Timothy Brown: The Other Side of the Cure
By Nelson Vergel
July 15, 2011
By now, we have all read several stories about Timothy Brown and watched his interviews on TV. For the few who have been living in a cocoon in the last few weeks and have not watched the news, I remind them that Tim, once known as the "Berlin patient," is the man who was cured of HIV through a long and risky procedure of chemotherapy, radiation and a CCR5-negative stem cell transplant.
Ever since I saw the first poster presentation at the 2007 CROI conference that mentioned his case, I have been wondering what it would feel like to be cured. Until that moment, that thought had never crossed my mind. What would it be like not to have to take pills every day, not to have to worry about side effects, not to have to go see a doctor so frequently, not to have to be afraid of rejection, not to have to spend so much time reading medical information, not to be worried about drug resistance and death, not to feel different from others?
I was happy to have met Timothy Brown this week while shooting my upcoming documentary on the challenges of HIV cure research. This great opportunity not only gave me a chance to get to know him but also to find out more about how it feels to be free of HIV while living in the United States.
Timothy graciously agreed to meet me for an interview in San Francisco, even though he had been asked to do this so many times in the past few months. He showed up dressed nicely in a suit, looking like a handsome businessman ready for an important meeting. I and my friend and camera person Greg Fowler put him through a series of questions, many that he had heard before, yet he kept his candid and approachable attitude throughout the interview while we had glaring lights on his face. I was able to ask him some personal questions about his struggle through his long but successful ordeal.
About a year ago, Timothy moved to the United States from Berlin, where he'd received the chemotherapy, radiation and two bone marrow transplants that got his leukemia in remission and his HIV wiped out of his body. The entire procedure was paid for by the German government. His oncologist and creative thinker, Dr. Gero Hütter, was a great advocate and supporter of his health who did not give up even after the first stem cell transplant failed to control Tim's leukemia. Tim did not have to worry about his ability to pay for this expensive procedure; it was a benefit of living in a country that provides its people with health care. He is sure that had he been living in the U.S., he would not have fared that well and he would not be cured. For a doctor to think outside the box and be allowed to do such an innovative procedure would have required a lengthy process of institutional review boards in the United States, which would have deemed it too risky even in Tim's justified risk-to-benefit situation.
Timothy's lengthy one-year ordeal at the hospital did not stop when he left it. Walking home one night, he was mugged and hit on the head while he fell on his shoulder. His injuries are persistent to this day and he needs physical therapy. Due to the loss of his support system in Berlin, Tim decided to come to his home country to start a new life after years of living in Europe. What he found out after arriving here surprised him.
Now that Timothy is back in San Francisco he faces the obstacles of a system with no universal health care, in which he has to go through a long process to apply for benefits. He is HIV negative, so he cannot apply to be covered by Ryan White for his medical needs. His health is good, but he is still on his path to strengthen a body that has been affected by harsh chemotherapy after a year stay in the hospital and by injuries caused by his attacker. He is happy to have made medical history as the first living person cured from HIV, but he is now shocked about how complicated the U.S. benefits and health system's bureaucracy has been. He told me that it is amazing that a country which was not his mother land cured him; and now his home country cannot support his continuing struggle to strengthen his health.
We all make assumptions about people we see on TV. He is no exception. I assumed that he must be a man who is not only lucky but who has a support system that ensures his continuing healing. So I was surprised about how far from the truth that is in his case. He is not able to work due to his physical therapy needs, lives on a small budget with several roommates, and is trying to quickly adjust to the challenges of reentering a world he left behind years ago. Many TV programs and magazines have covered his success story, yet none has offered any help to make his life easier in this country. Hopefully, we as a community can be supportive of him as we open doors that can lead to his fast recovery and entry into the world of the living. He is committed to being a strong voice in HIV cure advocacy, and some of us in the activist world will ensure that he is supported in his wish. Fortunately, his strong and fighting spirit along with his grounded and welcoming energy will get him to the other side of his cure: his long-term wellness and stability.
As I left San Francisco today, I did so with the knowledge that I'd met a great and warmhearted survivor that needs our support. I am committed to helping to connect him to the network of my peers who will welcome him to our world of communal wisdom. As I see it, he is HIV negative now but very much part of our struggle. And we need him healthy and happy!
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Comment by: Auth
Thu., Jan. 10, 2013 at 1:26 pm EST
Been enjoying your stuff for years, Frank thnkas for the fun!There's sign painted ads near me at 7th Avenue & Greenwich thnkas to Marc Jacobs! Love seeing the work as it's being done on the brick. By chance it's at the same location as the diner in Edward Hopper's Nighthawks !
Comment by: easydoesit
Sun., Sep. 25, 2011 at 12:32 pm EDT
I enjoyed this story very much, guess you might call me a stick in the mud because this is the first time I have heard of the cure for AIDS...I am very happy for Tim....I do have a question, being retired from the health care profession I have gone into may of AIDS homes and cared for many of people effected by this terrible virus...Most people had what they called "The Coctail" a assortment of many many pills,do these pills have an effect on the offspring of infected people..I am not talking about the offspring being HIV possitive I am talking about our DNA changing with these medications and then passing it on to the child...There are so many birth defects in this day and age...Thanks
Comment by: Zac Morris
Tue., Jul. 26, 2011 at 10:32 am EDT
I have a technical question about Tim's status...
Isn't Tim technically still HIV Positive, because he would show up positive on an HIV antibody test. Just because HIV virus and virons may have been cleared from his body, his own HIV antibodies should still be present and thus show up on both HIV antibody and Western Blot tests (because of HIV proteins present in the antibodies)? Since there is no technicay diagnosis of "HIV Cleared" in the US, he should still technically fall under a diagnosis of "HIV Positive" because our testing is based on antibodies, not of viral activity?
Comment by: Al
Mon., Jul. 25, 2011 at 12:02 pm EDT
Great article, I've been following this story for as long as it's been going on almost, your article actually sheds more light on Tim, Like what he went through and his continuing battles, it's really sad to see that his government can't or wont help this man until he can become a totally happy and healthy person that can contribute to society, and I think he has a lot to contribute! Tell him to move to Canada! we take care of our sick here too like Germany does! lol anyway thanks for writing this, it was a great read.
Comment by: David
Sat., Jul. 23, 2011 at 9:23 pm EDT
Nelson, this was one of the best most heartfelt articles you have written. I have lived with HIV for 26 years. You are absolutely right that this gentleman is to be embraced by our community and made quite visible for all to see and hear. This gives me hope. Thanks.
Comment by: Kirk
Sat., Jul. 23, 2011 at 1:46 pm EDT
Thank you for the update on Tim. It is a miracle that most of us long for. I appreciate all the positive thoughts and prayers for Tim and particularly, Mikes encouragement for Tim to look or think outside the box: Movies, play, book, etc. would be very encouraging for the world. Thanks again!
Comment by: Douglas
Fri., Jul. 22, 2011 at 10:00 am EDT
Nelson, thanks for this piece, and particularly for your line: "What would it be like not to have to take pills every day, not to have to worry about side effects, not to have to go see a doctor so frequently, not to have to be afraid of rejection, not to have to spend so much time reading medical information, not to be worried about drug resistance and death, not to feel different from others?" O, if only we could shed all those things, eh? Wouldn't that be great. As for Timothy: Tim, please, please, please, stay HIV-, and please do everything you can to get your full health back. Seriously, perhaps you should return permanently to Germany, where you can be sure of decent healthcare.
Comment by: Siegi S.
Fri., Jul. 22, 2011 at 3:21 am EDT
and I guess Tim still has to take pills - different ones though, to avoid his new immune system attacking his body (graft vs. host reaction). So he basically just exchanged one kind of pills for another...
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Comment by: Douglas
Fri., Jul. 22, 2011 at 10:02 am EDT
Siegi, you wrote: "So he basically just exchanged one kind of pills for another..." Er, no, Siegi, Timothy has not "just exchanged" the pills he has got to take. He no longer has the potentially fatal AIDS virus anywhere in his body. Think about that.
Comment by: gb
Thu., Jul. 21, 2011 at 5:28 pm EDT
Nelson, thanks for a great article -- writing about Tim in ways few people have, and letting us all not only know about his medical story, buy also his wonderful personality.
Comment by: Lisa
Thu., Jul. 21, 2011 at 4:55 pm EDT
Just another sad story to how ither countries show more support & give better medical care than the USA...the country that is suppost to be the greatest place to love. Sadened & angry at this article....USA should be shamed! As the first person cured of this virus he should be welcomed by all & have all the support necessary not only for his couragessness for beating this but for his contribution to the medical world...but of course he has to "conform" just as we all do when we should all be treated the same no matter what race, sex, sexual orientaton, religon or status we are!
Comment by: Michael
Thu., Jul. 21, 2011 at 1:21 pm EDT
I totaly belive that in this case, he was just another person who had received a false postive test, meaning he never had HIV to start with, and this is why he is now HIV negative. We all know there is NO cure for HIV, even what he went through during those long treatments, they would not have cured him of HIV. It is just not possible, so be real, he WAS NOT cured of HIV, he never had it in the first place, was a false postive.
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Comment by: Ted
Fri., Jul. 22, 2011 at 12:13 am EDT
Micheal, do you have some kind of info that we don't have? Where are you getting your info that "...he never had it (HIV)in the first place...."
Anyway, I'm so happy for him. The mugging is very sad to hear. I hadn't heard that before. He is functionally cured of HIV and then gets injured causing longterm injuries. It sometimes seems when something good happens, something bad always happens. I'm really surprised more mainstream news outlets haven't sought interviews. This would be good for "60 Minutes." They do good work and have a large audience.
Comment by: Neil
Fri., Jul. 22, 2011 at 3:40 am EDT
A false positive? You think he only had 1 HIV test? He's had many, many, many viral load and CD4 tests in his life time, all of which were positive before the transplant.
Comment by: Luis
(New York City)
Thu., Jul. 21, 2011 at 10:59 am EDT
Love the article. Now, you wrote, "He is HIV negative, so he cannot apply to be covered by Ryan White for his medical needs." Can you clarify if he is now testing negative for HIV antibodies?
Comment by: Mike
Sat., Jul. 16, 2011 at 2:51 pm EDT
Good piece Nelson, thank you for sharing. Though I have empathy for him and what he is going through now, I would hope he realizes there are a world of opportunities for him. I for one would be writing of my experience with HIV and now with out... seems to me there is one heck of a book deal waiting for him... Not to mention movie rights or even a play. Time for Tim to look outside the box with making a living and living now.
I hope he realizes how lucky or blessed he is even with all he has been through. His medical care was extra ordinary, and his doctors were angles in disguise. Sad commentary on the state of health care in the U.S., the quest for the almighty dollar has put compassion for each other as a side note..
I wish Tim all the best, wouldn't mind walking in his shoes for a little bit of time, maybe we all can..
Comment by: A German
Fri., Jul. 15, 2011 at 5:28 pm EDT
"The entire procedure was paid for by the German government."
That isn't true. The procedure was paid by the people in Germany who are members of the "Gesetzliche Krankenversicherung" ( http://de.wikipedia.org/wiki/Gesetzliche_Krankenversicherung ).
People who are members of the "Private Krankenversicherung" haven't paid a dime for this procedure, neither has the government.
Replies to this comment:
Comment by: Quay
(New York City)
Wed., Jul. 20, 2011 at 4:48 am EDT
I assume that since he was living and working in Germany he was a member of the Gesetzliche Krankenversicherung and was paying the same taxes that everyone was???
Comment by: Tusk
Fri., Jul. 15, 2011 at 3:57 pm EDT
What a beautiful piece! Sending Tim peace and healing. Assumptions rob us from experiencing the truth and true healing can never happen until truth is uncovered. Thanks, Nelson, for making him a real person.
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Outsmarting HIV: A Survivor's Perspective
Nelson Vergel is a chemical engineer who has become a leading advocate for sports nutrition, supplementation and the promotion of wellness in the HIV-positive community since his positive diagnosis in 1986. He is also the author of "Testosterone: A Man's Guide" and co-author of the book "Built to Survive"; the founder of the nonprofit organizations Body Positive Wellness Clinic and Program for Wellness Restoration; the Nutrition and Exercise forum expert at TheBody.com; and a bilingual speaker on lipodystrophy, wasting, exercise, nutrition, testosterone replacement, metabolic disorders, HIV medication side effect management and HIV salvage therapy. Nelson also moderates PozHealth, one of the largest HIV health discussion listservs online.
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Interviews and Articles Featuring Nelson:
HIV Nutrition (and Proper Pooping) With Nelson Vergel, Food Detective: A Video Blog (January 4, 2011)
Hitting the Gym With HIV Fitness Stud Nelson Vergel: A Video Blog (January 24, 2011)
Second Bioplasty Congress in Mexico: PMMA for Facial and Buttock Lipoatrophy (December 9, 2010)
Updates From the 1st International Workshop on HIV & Aging (October 21, 2010)
This Month in HIV: 2009 Update on Body Shape Changes and HIV/AIDS (April 2009)
Nelson From Houston: Activist Since 1986 (May 2007)
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