Rediscovering Biology: Molecular to Global Perspectives
HIV and AIDS Expert Interview Transcript: Erik von Muller
Von Muller was infected with the HIV virus in the early 1980s and is what is known as a long-term non-progressor: he has not developed AIDS. He is a participant in a study conducted by Dr. Jay Levy on long-term non-progressors.
Interview with Erik von Muller. Von Muller was infected with the HIV virus in the early 1980s and is what is known as a long-term non-progressor: he has not developed AIDS. He is a participant in a study conducted by Dr. Jay Levy on non-term non-progressors.
When did you find out you were infected with the HIV virus?
Technically, I found out probably in 1984, although in 1982 I was with my partner at the time and he had been diagnosed with PCP in August of ’82 and was expected not to leave the hospital. He did manage to live for 18 months, which was just a phenomenal achievement at the time. So I presume that I was probably infected sometime in the mid ’70s to late ’70s, because we had been together as partners for eight years when he was diagnosed.
What is PCP?
Pneumococcus Cranium Pneumonia, which was how many people back then learned that they were HIV positive. Remember, there was no word for HIV or AIDS, it was complete confusion and a complete unknown. People just showed up in the hospital with pneumonia that turned out to be a very obscure, unusual pneumonia, which was a real killer.
And your partner died from PCP?
He actually lived for a number of months thereafter. He had one more near death experience in February of the following year when his temperature spiked to quite a high number. And then he did manage to go home then. We went to Hawaii the following Christmas, he came home in January, and he actually died in my arms in the end of January.
You’ve been through a pretty rough time in your life.
I’ve lost a lot of people, as a lot of my friends have.
When did you know something might be wrong with you? Did you have some symptoms?
Actually, I never have had any symptoms. I’m one of those people, lucky. Certainly I had no idea at the time that I was in that class of people that don’t progress. I’m what they call a long-term non-progressor. So I’ve never experienced any symptoms, I’ve never taken any medications. Frank, my partner at the time, however, had experienced unusual symptoms that our internist just didn’t understand. He had had those symptoms for one to two years prior to actually going to the hospital. He actually came here to UCSF when he was diagnosed with PCP.
So you decided to go in and be tested? How did you get involved in this?
Well, at the time, Donald Abrams, a well-known researcher and AIDS physician, was Frank’s doctor, just fortuitously. Donald was an oncologist here at UCSF and had suggested that I volunteer for the Gay Men’s Health Study, which I did at the time. As my CD count remained high and as I didn’t progress with any symptoms and as I wasn’t taking any medication at the time, there was only AZT, eventually he suggested that I contact Jay Levy and enter his study of the specific population that didn’t progress.
How did you find out that you were infected?
I found out I was infected at San Francisco General. I waited awhile before I asked and I think I asked in ’85 or ’86. I had actually thought I was probably negative because I had no reason to assume that I was positive. I remember at the time, they had a social worker come in and sit down, you had to take an hour in order for them to tell you whether or not you were positive because it was a very emotional, traumatic experience. So they created an environment in which you could get this information. I remember he took me in the room, he didn’t even sit down, I sat down thinking we were going to spend an hour together, and he looked at me and he said, “Well, you know, don’t you? You’re positive.” And he walked out.
That was it?
That was it. I’d been around the ward a lot because of Frank and so I didn’t take offense at that.
You must have been stunned. What did you think?
I was surprised. You know, I was ambivalent. I had assumed that, when Frank died, that I would also follow suit soon. I never expected to see the year 1985. I certainly never expected to see the year 2000. To be alive and see the new millennia was something that, it just was beyond my hope. And, indeed, I spent it on the water a hundred meters from the opera house in Sydney, Australia.
I saw one of the most incredible fireworks displays imaginable. And now it’s the year 2003 and one still doesn’t know. I mean, my situation has remained unchanged, I don’t take medication, my CD cells-my ratios have remained constant over the years, and that’s wonderful. And who knows? Who knows what tomorrow will bring.
What did Dr. Levy tell you when you first hooked up with him about what was going on in your system, and what did he know at the time?
Considerably less than I think he knows now. At the time, it was not the factor he’s looking for now, but he was looking for the reason why a certain group of the population who were HIV exposed didn’t progress, didn’t develop symptoms, didn’t see deterioration in their levels of CD4 and CD8 cells. He was optimistic at the time, and has remained optimistic, and has been a great counselor to me, advising me against taking AZT for instance, because he felt at that time if you were HIV positive the general recommendation was to take AZT. He was adamant that if your CD4 cells didn’t drop below a given figure, that you shouldn’t progress on AZT. He wasn’t very fond of that drug at all.
Was that a difficult choice for you?
I was very fortunate that it was Jay. I recognized the degree of his knowledge and where he was coming from research-wise, and it was an easy decision, really. Although you’re right, it’s always hard to buck the trend. When everyone else is taking it, you feel a little left out and a little confused.
Are you amazed at how you’re doing? You live with the risk. Is it always in the back of your mind that you may progress?
No. It was for quite a while in the beginning. As a matter of fact, through the mid ’80s I would have occasional dreams where I would actually die in the dream. Obviously I was taking my fears and concerns and relegating them to my unconscious and they were coming out in my sleep. But I would say over the last five or six or seven years I’ve become, for the most part, maybe a little too easygoing about it, a little too forgetful of what is in my body, what my immune system is actually doing for myself. I’ve had a great deal of stress in my life over the last two years, and then you worry about that. What’s the stress doing? When I first got my viral load it was much higher than I anticipated and that was concerning. I had some minor symptoms-whenever I have minor symptoms that usually turn out to be for reasons having nothing to do with HIV and I talk to Jay, he just kind of puts things back in perspective.
Why do you come in here every month or so?
Well, I’m not going to say that I don’t have a selfish motive. I get to see Jay, a fine researcher, I get to have my blood drawn and get that information, I can use that information with my own doctor, and I guess it’s a very confusing thing to have lived with someone and watch him die in the way he did and then to watch so many other people that you know and are close with or that you just know casually and to watch so many people in a community die. I used to get the Barrier Reporter, that’s the gay newspaper, and I would go immediately to the obituaries. I felt, this is really odd, this is like I’m an old man living in New York, I can hardly wait for The Times to come out so I can see who’s alive and who isn’t. And that’s how devastating it was. You feel helpless. Initially it was a feeling of empowerment and now I just think it’s an ability to help pay back, an ability to just say, it’s not that bad.
I used to be terrorized by having my blood taken; no longer. It’s the least I can do and if I could do more I would. It’s a savage disease. We have become somewhat complacent about it in this culture. If you go any other place in the world, go to Africa or Asia, people can’t afford to be so complacent. If there’s something in my immune system that is common among all long-term non-progressors and that can be discovered and that can be used to fight this virus, then that would be something that would be really quite incredible.
Do you know anyone else in the same situation as yourself?
I actually can’t say that I do. I have come across one or two people where we’ve had a conversation and we’ve shared the same experience. But no, I can’t say that I know many at all.
Do you have confidence that something good will come out of this? Do you feel like the research is headed in the right direction and that they will find this CAF protein?
I hope so. I think that the drug industry in this country tends to look for easy, one-shot solutions that can be marketed. I think this is a more subtle and sophisticated approach. I hope it’s not an uphill battle once it’s better understood. It seems to me-and I’m by far not qualified to comment-but logically that it’s a rather elegant solution, since we know that the virus can develop resistances and can mutate. That if we look at it from the other end, of creating an immune reaction in the host, in the individual, that that could be quite an elegant solution.
Can you discuss the need to continue public health efforts and prevention efforts?
It’s very, very difficult. I feel extremely fortunate that I didn’t progress on to AIDS. At the same time, I feel very lucky that I never really had to make a decision about how I wanted to conduct me life. When I seroconverted, as I said, there was no understanding of what HIV was or what AIDS was or how it was transferred from person to person, so I never really had to confront within myself those demons, those challenges, those fears. All I can say is now I can see it in the community. That there is a growing complacency, a growing acquiescence. I think there is a belief that the main crisis is over, and I don’t think that’s the case. I think that it’s important to constantly renew the efforts to educate all groups of people in order that they can make informed decisions about their own health and the health of the people they care about or interact with. It’s also important to realize that we don’t have the final answer, that the current therapies aren’t necessarily a cure. I already know, unfortunately, of several people who have been on combination therapy, who have gone on, developed resistance, and have died.
Is there anything else you want to say about this whole experience that you’re going through?
You know, I’ll say something that may be a bit bizarre. In a way, it was a gift, in the sense that it gave you an opportunity to wake up, become awake, and see what’s going on, you know, smell the roses. It comes at a terrible cost. I just think that over the years, the way the community has come together, so many people in the community have come together and provided services, provided help, provided assistance, it’s been amazing. I’ve had amazing experiences with hospice people, with volunteer groups, with people who have given of their time to help people who have become infected and gone on and become symptomatic. It’s really remarkable. It gives you a lot of faith in all of us.