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This Positive Life: An Interview With Robert Cohen

September 15, 2010

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A lot of people wonder are you doing anything to cause this. Are you juicing or taking vitamins or exercising?

Well, clearly, exercise has not been an important component in my routine. I used to be really slim and fit. I've never had weight until now, until the past 10 years or so, 10 or 11 years.

So you didn't do anything special that would have a special effect on your immune system?

Absolutely not.

So, how out are you about your status?

I actually, so now I have a small business of my own. I do consulting for small businesses. I even find myself occasionally bringing up my status with clients. There are occasionally clients that I have developed a fairly personal relationship with.

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I wasn't able to be open about all of this when I was working for large companies. I always felt it would be a dangerous thing to do. That, having been in management before and having seen how these things work in these large companies, I know that it's possible to get rid of someone without a lot of liability if you either have personal prejudices or you just think you want to have a team that is healthy. You don't want to have any sick people, even if they are not asking for anything special.

And you didn't all those years?

I didn't.

Just a regular employee.

Exactly. The only special things I ever asked for was when I went on disability for stress, for depression, then I had to share that with them. And no, there were many years when I thought, especially, I worked for the phone company for most of my career. And during those years I really thought these people, this place is so friendly to people like me, to gay people, to people with HIV, they'd never.

And this was San Francisco?

This was San Francisco. They would never do anything to me. I really ought to tell them, but you know I really couldn't. I was gone for doctor's appointments when I needed to be gone for doctor's appointments -- and I was sure gone a lot.

And there were times I was gone for study appointments and I just said doctor's appointments and no one ever said anything. I really wish I could have been able to tell the truth. I feel like I left associates, people that I worked with -- who didn't know what was going on with me, why I made certain moves, did certain things -- and I have since told a number of those people, because I don't work with them anymore. They are just friends now and they have all gone -- everyone who I have told has sort of said, "Ah ha, I had no idea."

And they've been fine?

Yeah, they've been fine. I visit them and play with their kids and they dog sit for me. We see each other socially and they are totally fine. The problem was mostly in me -- it was probably would have OK. I felt like I had to be truly safe, that I couldn't take any chances that I didn't want to wreck what I had --it was too hard to put together.

It was your livelihood, it was your health insurance, and it was your life insurance.

It put food on my table.

Who did you tell? Did you tell your parents? Did you tell your family?

First, I told a man that I was dating. I told an ex-lover who is still a good friend, who I had only been close to as a friend for a number of years. I told my sisters, both my sisters.

And how did they react?

They were very supportive. At one point, one of my sisters' lives were very wrapped up in matters of her own and she was sympathetic, but really didn't have time to spend time with me and kind of nurture our relationship. I thought she just didn't care and at some point, I said to her, "I guess we're just not that close anymore and I guess it wouldn't matter if something happened to me." And oh was there drama.

And as it turns out she and I have gotten incredibly close, we are really good friends. I spend time with her and her family, several times a year.

Where does she live?

She lives in Atlanta, outside Atlanta.

So they never worried that one, you were immediately going to die. Or two, you were going to infect their kids?

I never got the "You'll infect my kids" thing from either of them.

So they were informed?

"Don't panic. Well, you can't say don't panic, we are all going to panic, but put some boundaries around your panic and be informed. Study, dig, talk, in whatever medium of communication you are comfortable in that can really get you through this, get you through day to day. Give yourself some idea of what to expect."

They were informed. They read the media. I also helped keep them informed, because as these awful stories kept coming out, I often would send a clip in with a note attached pointing to other stories disputing these crazy, stories about a doctor who shouldn't operate anymore or a patient who shouldn't receive surgery, so on and so forth. And they were very supportive.

So what advice would you give to someone who is just diagnosed?

Don't panic. Well, you can't say don't panic, we are all going to panic, but put some boundaries around your panic and be informed. Study, dig, talk, in whatever medium of communication you are comfortable in that can really get you through this, get you through day to day. Give yourself some idea of what to expect. Quell unnecessary worries -- it's information, that's where it's at.

Did you think there is a conflict between non-progressors like yourself and progressors?

Well it's interesting question, I haven't had it expressed to me, and I haven't picked up on it.

Oh, "I'm jealous," I'm sure.

You know, I have a close friend who's been on meds for years and years and years, but his life is much more complicated than mine. He is surviving, but he is not a controller, we know that for sure. We are still good friends. I think he can talk to me about anything. It would seem like something to expect, but based on my experience with a couple with someone who is negative, but...

So where do you get your support now?

I have several close friends. Straight and gay.

Are you part of the controller, non-progessor elite community?

I am a little bit. I just discovered an organization called the Zephyr Foundation that reaches out to the controllers and keeps us informed and gets us together. We actually had our first in-person event about two or three weeks ago. There were seven or eight of us [controllers] there.

Was that your first time being around elite controllers?

No, there have been other people I knew in business and other circumstances, in a rare moment of being really personal with each other, we found this out, that we had this in common, but then I realized that there really wasn't a social connection.

So there weren't people to spend time with and ask questions, or let them ask questions they wanted to ask of me. And so I never had that experience until this time we all got together. It was actually for a sort of conference, there was kind of a formal part of the day and then we shared a dinner together.

The best part about the conference was the social time. The one on one time, the one on three, one on four time, sitting at the dinner table and trading stories and listening to people.

And asking questions, it was amazing, it was something I had sought for years and years and years and I thought it was never going to happen.

It's been a long time.

It's been a very long time. I used to imagine that I would run into someone as I would run into my study appointments and hope I would run into someone. The doctors had to set up in their protocols, one of the procedures was that there had to be certain spacing between patients, there had to be anonymity.

They went through a lot of trouble to make sure you couldn't run into anyone. And it seemed like it was never going to happen. I even talked to other researchers about it. Gosh that was like 10-16 years ago and at that point it didn't seem like a good idea and he wasn't incredibly receptive.

It just didn't serve the science.

Yes, from his point of view, it just didn't serve the science. There was some possibility that it could put the results in jeopardy because you could lose some participant and there could even be liabilities or malpractice or whatever. Science people are pretty conservative people.

So let's talk about a non-conservative thing. What do you think about the Swiss statement that said that someone with an undetectable viral load is unlikely to transmit HIV? The only studies they have done is heterosexual monogamous couples who are trying to have babies who they have found in their studies have not transmitted HIV.

As a long time non-progressor you seem to be in the perfect position, the only problem that has been voiced -- well there are many -- but that you cannot tell from viral load reading to viral load reading, what's the viral load. So you are betting on your life.

"I can't imagine infecting someone. I can't imagine having unsafe sex with someone who is sero-negative; even if they felt that they believed in poor scientific information so far.

"I just couldn't do it. I just can't -- it's just crazy."

Exactly.

So, with someone who has had undetectable viral loads as long as you have, I would love to hear your thoughts on this.

Sure, OK. It's funny that you mention this, this was a subject of a long conversation at that dinner party and that was the first time I had really heard and thought about it. I thought about the idea of transmission, or non-transmission from someone like me. I have always been really conservative about it. No one can cite a study that has satisfied me -- let's put it that way. That's in succinct terms.

One of the problems with the information that I have heard is that the numbers, the labs they are talking about are viral loads, which are done from blood. What they are not studying is seminal fluid and if someone did a study with elite controllers and studied seminal fluid, measured the virus in it over a long enough period of time to satisfy the scientific peers and had a good study, sure I would be very interested in that. But, what I am hearing is a lot of people supposing things and trying to work out the logic of it, sort of in a kind of rationalizing sort of way, in my way of thinking.

I can't imagine infecting someone. I can't imagine having unsafe sex with someone who is sero-negative; even if they felt that they believed in poor scientific information so far.

I just couldn't do it. I just can't -- it's just crazy.

Well thank you so much for taking the time to talk to us.

This transcript has been lightly edited for clarity.

Send Robert an e-mail.

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This article was provided by TheBody.com.
 
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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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