September 15, 2010
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?
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.
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?
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.
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.
So, fast forward to when you find out you were HIV positive. Did you go to a doctor? Did you get a CD4 count?
Yes, so I tested at the city clinic at 17th and Pond Street, along with thousands of other people. Got my news there. I already had a gay doctor, but I made an appointment to see him and I was just in the middle of some career moves. A corporate relocation was kind of hanging in the balance, while this was going on.
In fact, the day I got my test result, things in that area sort of gelled, and I had to make a decision and on the spur of the moment I said, "Ok, I'll do it." I'll go ahead and move out to the suburbs and take this other job and be away from the city for a couple of years. Maybe that will be good, because this is really a sad place right now.
What I didn't know was that I was going to really need the support that was available to me in the city. There were so many resources, not just doctors, but peer type resources. That wound up being a move where I still spent a great deal of time driving back and forth because I recognized that, this was a pretty traumatic time and I really needed to talk to people and have some help getting through it.
What kind of work did you do?
I was working, actually, for a large company in IT. The job that I took, the relocation was to manage the group I had been part of, the database group. So, the work changed. I had a boss who at some point during these two years, I remember I came down with parasites. I was already worried about being HIV positive and living in this crazy place and trying to take care of myself and then there was this very demanding job.
At some point, this executive who I worked for said to me, "You know if you would worry about the important things here, instead of the little things (meaning the things in your life) then this would all be so much easier." She said this to me fairly early on and I wanted to say to her, "But lady, you have no idea, those are not little, the things I am worried about are not little things."
But I couldn't tell her because even in California, even in San Francisco, there was discrimination. And I just couldn't be open. So I kind of stuck with it. I stuck with it for a couple of years and finally at the end of a couple or so years, I decided that I had to move back to the city. Created a job for myself.
And so what was going on in your personal life at that time?
Well I had fallen in love, I thought. There was a lot of drama.
With a positive man?
No, actually with a negative man. He was very understanding, but I always felt that he truly couldn't reach me. As nice a person as he could be, it didn't seem that he could experience life or really understand what I was going through because he wasn't in the same place. And he hadn't had this news come to him, which at the time, pretty much meant you ought to be thinking about early retirement. You need to be increasing your life insurance policies, which is what I proceeded to do.
I tripled my life insurance, which I was lucky enough to be able to get. I bought a private disability policy, which I kept for years and years and years. I just got rid of it maybe 8 or 10 years ago, when it became clear that there were elite controllers and that I was one.
What was your first CD4 count?
Normal. Probably 1200.
And your viral load?
In those days they didn't have viral load. It wasn't until the '90s until the viral load came out. But clinically, I have never had... I have had one T-cell count that was 391 or something. It was a glitch, an old sample. I have it in my spread sheet. My counts have ranged from 391 or so, to 1800 and something. They average about 1100; you know generally they are sort of 800-900-something, 1100-1200. The same as a person on the street -- nothing unusual.
So back then, when you were going to the doctor each time, were you worried that bad things were going to be found out? Were you worried that they would diagnose something?
Absolutely. Every little spot on my skin, even with plenty of T cells, when they able to do the T cell test. Even with that, I was among the worried well, the very worried well, I think that that's how you could classify me.
You've never had an opportunistic infection?
Never had any sort of opportunistic infections. I have been extremely lucky.
So before we get into this, let's go back to the really bad years. You were worried; people were dying all around you, there were obits in the paper every day, friends of yours were dying. Were you going to their funerals or memorial services or were you avoiding them?
So you were avoiding them because you thought you were next?
Yeah. I don't think I knew why. But, I just wasn't comfortable with the idea. I didn't want to expose myself in that way, to death.
Because you were just too frightened?
Yeah, and I tried to put into the perspective for the most part these were people I wasn't close with at the time in which they died. They were at best, people I had been close to, some months or years before and our paths didn't cross in those last months or last years or so. That was my rationalization as to why I couldn't go.
Did you take medication or go to therapy to deal with your anxiety?
Were you on Xanax or something?
Actually, they didn't prescribe anything for the anxiety. At some point it became depression in the early '90s and I actually went on disability for 3 to 4 months. That occurred really when the grief came much closer to home. I had a friend who lived in the neighborhood that I had lived in the city, just around the corner. We just became really good buddies and over the months and years, he got sicker and sicker and sicker.
He became a really large part of my life. I and a group of other people wound up taking care of him until he died. And so it was through that experience that I really got close, I allowed myself to experience it fully. And you know in the process, surprise-surprise, I was depressed -- major depression.
Were you in groups with other HIV-positive men?
Yes. From time to time, there were groups that were conducted by different researchers at UCSF. Oftentimes, they were experimental groups and often the topic was, "How does reducing stress in HIV-positive men change their outcomes and their labs?" That sort of thing and there were a number of those and I really loved them. I really liked the stress reduction exercises; I learned to meditate and so on. They were really useful.
So at what point did you find out, or did a doctor let you know, that it looked like you were a "special" person with HIV? I don't know what the percentages are? Two percent, 4 percent?
Less than 1 percent actually. And of that less than 1 percent, there's even a smaller percentage of those who are actually elite controllers. There are controllers that are about 1 percent of people as far as I know. So at what point? It was probably late '90s? Gosh, from what I remember, I was in the study with Jay Levy. A friend of mine, who I had in my one kind of only experience with ACT-UP, was someone who I met in that time. She worked at UCSF and she told me about what Jay Levy was doing and was looking at people who seemed to be surviving by some unknown mechanism.
And I got plugged into him and naturally I tried to steer the conversation -- he is a very personable guy, and very easy to talk to. But naturally, I would try to steer the conversation to be about me.
What did he say?
Well for the longest, he would say, "We don't really know." He was quite honest, he told me what he was seeing, but it wasn't until the years added up that the answer became much more obvious. And actually it was not him who finally answered my question, which was "How am I likely to meet my end?"
That question haunted me through all those years, not knowing. It was actually another researcher who had the courage to tell me, "Look, probably, we don't really know for sure, but I'd be really surprised if you met your end with HIV." He says, "It's probably going to be something else that's going to get you."
And I said, "Really? You really think so?"
What year was this?
Probably sometime after 2000 I think, because I lost my lover in 2000. [Editor's note: Robert later clarified the year was 2005.]
From HIV. And, for nine years between 2000 and now is sort of a dark place for me. The depression really continued and became much worse after I lost him.
How long had you been together?
Let's see, about eight or nine years. It was a huge loss for me; it was one of those really close to home. It was painful, in oh so many ways. There was a lot of drama as it happened and it was very difficult.
So how have you dealt with the survivor guilt?
Well you know, now that there are lots of studies going on, I have found more and more studies as the years have gone by, especially the past 5 or 10 years or so. I am able to contribute to those studies. I travel a couple of times a year or more, cross country, to contribute to studies, and several studies locally. And I figured that's what I can do.
I have friends who buy a lottery ticket every Saturday. I usually don't buy one, even though we are walking into the store together and they buy one. My story is that I've already won the lottery. It's not money. It's something much more precious.
I try to do what I can, to make sure that researchers have the material that they need, if they need material from people like me, they have what they need.
When you say material, you make it sound so cold, like they are actually biopsying and taking blood and invading.
Absolutely, they are biopsying; they are taking white cells at NIH and in Boston as well. They hook me up to a machine and filter out the white cells -- take a couple bags of those a couple times a year and they use those in their research. Apparently, it's invaluable for them to get the white cells in that way.
It also happens that my cells reproduce, are good reproducers, and so the labs usually want to see more and more of me, because the materials I can give them are so useful to them. So that's what I do.
As it happens, even though I'm in this category of elite controllers, there are some scientists who feel that there is a genetic component to that, and that there are certain genes that they can point to that seem to be associated with this. However, the indicators in me are very different. The gene that I have that they would look at is not one of the typical ones. In fact, it is very rare to find this particular one -- it's called an allele -- in controllers. Usually the people who have the type that I have are fast progressors. In some ways, I throw cold water on whatever it is they are proposing, because I always chime in, "But what about me?"
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?
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.
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?
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?
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.
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.