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This Positive Life: An Interview With Robert Cohen

September 15, 2010

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Inspiring stories of people living with HIV.

Welcome to This Positive Life Video Series! We have with us Robert Cohen. Being diagnosed in 1986 in San Francisco -- the epicenter of the epidemic at that time -- Robert was convinced that he was going to die. He watched so many of his friends pass away, yet he stayed healthy and undetectable over the years, not knowing why. Then in 2000, Robert was told that he was a long-term nonprogressor and an elite controller -- an extremely rare group of people living with HIV for 20 to 25 years or more who have not yet experienced a severe loss of CD4 cells.

So let's start at the very beginning. When did you find out that you were HIV positive?

1986.

So in the dark old days?

In the dark old days. It was a few months after the first HIV tests were available. It took me probably six months to get up the courage to be tested. And there was a lot of stuff going on in my life at that time. I had the idea that I didn't want to miss any bit of information, as I sort of threaded my way through the rapids of my life.

And why did you think that you were at risk?

Oh, well, I had been having sex with men since I was 15.

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And all the gay magazines and newspapers were talking about how there might be a gay cancer or GRID or something like that.

Sure, even the mainstream media was talking about, but definitely the local gay press was talking about it, my friends were talking about it, doctors were talking about it.

So you were seeing gay doctors?

Yes.

Where were you living?

I was living in San Francisco in Noe Valley.

So the heart of the epidemic?

Yeah. Not far from The Castro. I just concentrated on work a lot.

After you found out?

Well even before.

Meaning just to deny that.

Exactly. To have something to do to not think about the monster in the room.

And at that point, there were a lot of monsters, because San Francisco was probably seeing daily deaths, so it was pretty bad.

Yeah.

"So months would pass and I would hear from someone, 'Did you know, so and so is sick? He is going into the hospital.' And then it would be a few days and this person was gone. That happened repeatedly."

So were people around you dying that you knew?

Yes, there were just countless people that I lost and oftentimes, at that stage, these were not people that I was really close to, but they were people who were kind of in my orbit, who I knew to some extent.

And one day they would be partying, it would seem. These weren't people who I saw frequently. So months would pass and I would hear from someone, "Did you know, so and so is sick? He is going into the hospital." And then it would be a few days and this person was gone. That happened repeatedly.

How old were you?

I was in my early 30s.

So it's not usual, in your 30s, to have all your friends dying.

Mortality is not something that one thinks about. Five or ten years before that, gosh I was a bartender in Boston for a couple of years right after college at a gay bar. We partied a lot, we played. By the time I came to San Francisco, I had done so much partying and sex.

When you say partying, do you include drugs in that?

Some, not a lot. Drinking and a little dope. But mostly having sex. Mostly it was pursuit of pleasure. You know, I was just really coming out when I went to Boston, and so it was the sort of the place where I first experienced being on my own and being able to do what I wanted to do without having to sneak around.

Where do you come from?

Around Atlanta, Georgia. The Deep South. But you know there is a lot of sex that goes in those places, but in those days we didn't talk about it. Southern boys, southern people, it's a warm climate; people don't wear a lot of clothes.

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This article was provided by TheBody.com.
 
See Also
More Personal Stories of HIV Long-Term Nonprogressors


Reader Comments:

Comment by: Rob Cohen (San Francisco) Mon., Oct. 4, 2010 at 4:37 am EDT
Mandy,
You _are_ special might be a long term non-progressor. Please look at www.zephyrfoundation.org for more information. I realize nearly all the studies listed there relate to US residents but you may be able to locate other studies closer to home via those resources. Thank you so much for viewing/reading and commenting. Hope your future continues to be rosy and healthy.

Rob
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Comment by: Rob Cohen (San Francisco) Mon., Oct. 4, 2010 at 4:32 am EDT
Sandy,
Thank you so much for the kind words and thoughts. Believe me, it was a journey, getting to where I am now and I spent a very long time trying to cope with the future and not knowing what might happen to me.
Support from peers has been the key to survival and sanity. I hope you'll find your own ways of coping and live a long life despite your diagnosis. The outlook has changed so much since the really bad, scary old days. I have so many friends now who are surviving and thriving despite an HIV diagnosis because the treatments are so much easier to tolerate nowadays. I wish you the very best.

Rob
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Comment by: Rob Cohen (San Francisco, CA) Mon., Oct. 4, 2010 at 4:20 am EDT
Manny,
Glad to hear you're reaching out. Please look at www.zephyrfoundation.org to make some connections. Thanks for reading/watching and your comments.

Rob
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Comment by: Sandy (Boston) Wed., Sep. 29, 2010 at 10:51 am EDT
Rob, you are so frank and open. It was inspiring and helpful to read this great interview. I am only 23 and recently diagnosed and unable to come to terms with my life. You seem to have a very sure sense of self and take responsibility for all that you've done. I hope to one day feel the same way. Thanks for your bravery in talking to the interviewer and for allowing your story to be up on the web. It's helped me so much. I think about you all the time now whenever I'm feeling down.
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Comment by: Mandy (London) Fri., Sep. 24, 2010 at 5:21 am EDT
Am 33 I ve been positive for 11 yrs now...not on meds or any thing,I ws only 22 when I found and I thought i would be dead by now...I feel special.I enjoyed reading this article as I have nt been in any research realy.
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Comment by: Manny (san francisco, ca) Thu., Sep. 23, 2010 at 1:52 pm EDT
Thank you for this article, it has motivated to search for others like myself. I am what is considered a viremic controller, still part of the less than 1% of HIV+ folks that are non-progressors but not in the sub category of elite. I do have a detectable vL (around 3000) after 10 years without meds. My tcells have ranged between 600-1200. My story is different in that I learned of my status in 2000 and already there was some understanding about people like me. I was informed early on that my labs looked special, but it was only years later that participation in Dr Levy's study and the one at SF General with Steven Deeks informed me of how special I was. Since being diagnosed I have attended many support groups, dated an HIV negative man for over 6 years, changed careers to work with newly diagnosed positive gay men and really learned to appreciate my life. I still have not told my family, and don't plan to. I'd love to meet more people in my situation, as this is a very odd place to be. My takeaway has always been that I was given another chance and I should cherish this as well as try to give back in any way that I can. Thanks again!
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Comment by: Robert Cohen (San Francisco, CA) Mon., Sep. 20, 2010 at 10:39 pm EDT
Joey and Rose,
Thanks so much for taking the time to read/view the interview and respond from your hearts. It's my fervent hope that research on controllers will lead to more effective treatments and perhaps therapeutic and preventative vaccines before long.

Rob
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Comment by: rose (wrightwood, CA) Sun., Sep. 19, 2010 at 12:20 pm EDT
It was so good to read this article, a story of survival from one of my heroes "on the journey". Ever since my diagnosis in 1997, I have considered all those that sero-converted in the 80's and lived to talk about it my heroes. Without them, I don't think I would be as healthy as I am today. They spoke out, "Acted Up", and made it possible for me have access to care that I don't believe would have been an option for me if they hadn't. I really admire you for your willingness to participate in the medical studies you are involved with. Non-progressive poz folks and elite controllers (I learn something new everyday!!:)are the key to this bitch we call HIV/AIDS and the key to finally kicking her out of our lives!! Peace to you Brother and Thank you.
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Comment by: Joey k (Atlanta) Fri., Sep. 17, 2010 at 11:55 am EDT
Superb interview. I had no idea that people like you existed. What a lottery winner! best of luck and hope you stay healthy for a long time!
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Comment by: Rob Cohen (San Francisco, CA) Fri., Sep. 17, 2010 at 12:28 am EDT
Loreen,
Fancy meeting you here :-). I'm so glad to call you a friend and confidant!

Rob
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Comment by: Rob Cohen (San Francisco, CA) Fri., Sep. 17, 2010 at 12:26 am EDT
Paul,
I'm happy to hear your story and know more about other lottery winners. We are lucky beyond words.

Take good care,
Rob
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Comment by: Robert Cohen (San Francisco, CA) Fri., Sep. 17, 2010 at 12:24 am EDT
Jimmy Mack,
Thank you for watching/reading. I am glad to share my story.

It _was_ Bonnie Goldman who has moved on from TheBody.com and the interview was recorded last Autumn. Sorry to disappoint.

Read your interview with Bonnie tonight. What an amazing story and life journey. Dreams can come true! Congratulations on your sobriety, too!

I worked for a few months at the Cabaret on Landsdowne and then mostly at 1270 in 1974-1975. I would have missed you at BU unfortunately. Those were the days...

Rob
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Comment by: Loreen Willenberg (Sacramento, CA) Thu., Sep. 16, 2010 at 7:53 pm EDT
I'm so proud of you, Rob. What a spectacular interview! You've given us a riveting glimpse of the devastation wrought by AIDS in the early days of the epidemic, but you've also shared a wonderful story of survival with us. I will always cherish our trip this past spring to donate to Bruce Walker's study - we made history, my friend, since it was the first time two 'elite controllers' have ever combined their itinerary and flown together. What an amazing time we had, and you were a great road buddy. Sending you hugs!
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Comment by: JIMMY MACK (SOUTHAMPTON, NY) Wed., Sep. 15, 2010 at 8:33 pm EDT
Great interview! Was that really Bonnie Goldman talking to you? is she back at The BODY?? She interviewed me in orint for the BODY. What bar did you bartend at in Boston? Buddies, 1270? I went to BU and came out there in 1978. Again, loved your story, thanks for sharing it!
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Comment by: paulm63 (Tucson, AZ) Wed., Sep. 15, 2010 at 6:25 pm EDT
i have a similar story. in 1987, i was diagnosed HIV+ at the age of 24. it's hard for people to imagine how grim that news was back before drug cocktails began lengthening lives. i wasted 10yrs waiting for my life to end. i spent 3 years on an AZT/3TC combo before my doctor suggested i may be just as healthy off meds. i have not taken any HIV meds since 1999. my CD4 count is stable around 500, and my viral load is stable around 1000. i sent blood into the HIV controllers study in Boston two years ago. i don't claim to have done anything to put myself in such a fortunate position. if anything, i spent the first 10yrs after infection doing the opposite of what was good for me. now, i'm an RN, working in a hospital that regularly cares for patients with AIDS. i hit the lottery. Best of Luck to all those affected by this disease.
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