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AIDS 2006; Toronto, Canada; August 13-18, 2006

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The Body Covers: The XVI International AIDS Conference
XVI International AIDS Conference: An Interview With Loreen Willenberg

August 18, 2006

Listen (3.3MB MP3, 9.5 min.)
This is Bonnie Goldman, and I'm here with Loreen Willenberg, who is one of the participants in a study by Dr. Bruce Walker. The study, which he's trying to recruit [participants] for, focuses on what he calls "elite controllers" and HIV non-progressors. Elite controllers are HIV-positive people who maintain undetectable viral loads without taking antiretrovirals. HIV non-progressors, also called viremic controllers, are those who have maintained viral loads up to 2,000 without taking antiretrovirals. Loreen belongs to the group called elite controllers. She's come all the way from California to tell her story.

Loreen Willenberg
So, Loreen, how long have you been infected with HIV?

Since 1992.

Have you ever had a detectable viral load?


So you have gotten continual viral load tests and there's never been any detection of the virus?

That's correct. Never. [I have] never registered any viral copies in 14 years.

And your CD4 is very high?

Yes, it is. They [the doctors] indicate to me that I started [with a] high [CD4 count] 14 years ago, and [since then] it's actually climbed. So, very high.

And you feel fine? You have never ...?

I feel fine.

You have never had pneumonia or any ...?

No. The only symptom that we [the doctors and I] feel that I exhibited was when I was sero-converting. I had a really bad flu. Being a gardener and running a professional landscape maintenance company at the time, with employees, I was rather disgruntled because I wasn't used to getting the flu. In fact, I have not had the flu since 1992 -- or a cold. So that's the only symptom, we think -- [at the time of my] sero-conversion.

How does it feel to live with a disease that you never exhibit in any way?

Well, it's kind of interesting. A friend of mine from an online support community asked me that [same question] earlier this spring. He asked me to go ahead and write about my feelings and my experiences being involved in these research protocols. I entitled the -- I think it was a three-page article -- "Partially Positive." It's kind of like feeling that you have one foot on each side of the fence: you have the medical community confirming that you're HIV-positive; yet, you have these researchers indicating to you that you are involved in a unique subgroup of people that have suppressed the virus innately, organically. So, you do feel like you have a sense of maybe not belonging to the HIV community. But I'm a compassionate gal. Of course, I'm honored -- if I can help in any way, then so be it. This is what I have to do.

You're in Dr. Walker's study?

Absolutely. He brought me to the Toronto International AIDS Conference to join him in a press conference, where he was hoping to reach out and find more participants for this [study]. We used to call it a long-term non-progressor study. Now they're using the term "viremic controller," and then there's another subcategory: They're considering me and a few others "elite controllers." It might be immune based; it might be genetically based. They have pretty much ruled out that I have a weakened or attenuated strain of the virus. So they know it's not the type of virus, per se. I believe that the next step is to do some genetic typing. Not of the virus, but of our bodies, and DNA research. So, it's very interesting. It's definitely like a science fiction novel.

Have you met any other controllers, elite controllers or non-progressors?

Just one and he's in Australia. He actually introduced me to another study being coordinated by the National Institute of Health. We both traveled to Bethesda, Maryland, in June, and finally met. We actually spent four days together, which was fabulous. You know? I had an opportunity to meet someone that I probably never would have met. We're actually, Paul and I, are actually very happy that we have met, because we kind of clicked -- this unexpected kindred spirit thing. It turns out that we're each equally committed to it from a spiritual place -- committed to the research. Altruism is a big thing for he and I. Plus, we're really happy that we're not in it alone, that there's someone else out there like us. I know there are more of us. I hope to meet them.

I understand that you hadn't really disclosed your HIV status previously but you decided to do so recently. Could you tell me a little bit about the experience of disclosing and what inspired you, and how it feels to be out?

I can. I realized over the spring, that the last year for me has been an evolutionary process, bringing me closer to the decision that I wanted to publicly disclose.

Back in December, Dr. Walker flew me to Boston and I had a tour through his laboratories. I really had what's called an epiphany, meeting all of those committed researchers face-to-face. I had absolutely no fear of disclosing to them. Then, with my involvement with an online community, [I] was inspired by many of the stories of disclosure by other individuals. Also, POZ Magazine [was influential], and [I] was very inspired by [POZ's new editor-in-chief] Regan Hoffman's public disclosure in April.

But I think, ultimately, as a woman past the half-century mark, that I felt the burden of the secret was eventually going to wear me down physically. And maybe, just maybe, affect this rather sterling circumstance, or status, that I'm involved in.

I'm typically known for being an assertive individual, a very honest individual and compassionate. I just decided that I didn't want to live in the shadow[s] anymore; [I] just wanted to get rid of that burden. Ever since I interviewed with my local newspaper [publicly disclosing my HIV status for the first time], I have experienced my bank tellers coming from behind their counters to hug me and thank me for sharing my story. Two HIV-positive individuals in my community, unbeknownst to me, came out to me. I feel I am living the real, authentic -- a more authentic life than I had [been living] before I was diagnosed. Before I had to draw back and go into the shadows out of fear of stigma or discrimination.

And [then there's] advocacy: I'm like this newly born activist. I just can't say enough about the whole issue.

You live in a small town, I take it.

A very small town.

You live in Diamond Springs, California, with a population of about 5,000 people, and you're a landscape designer. So you must know a lot of people in that area.

I do, indeed. I have been a long-term resident there. I have been there for almost 23 years.

I have done a lot of commercial design and construction. I have also been active in the water conservation issue, and was well known for being a proponent of saving water in home landscape [design]. So people had seen me in the Board of Supervisors meetings. They had actually seen me on Sacramento news channels -- although this was back in the late 1980s, early 1990s. I'm not averse to speaking from a passionate place about an issue. What I find interesting is that it took me 14 years to actually evolve to the place where I am today, sitting with you.

Well, thank you.

Click here to e-mail Loreen Willenberg.

If you are a person with HIV or a medical professional interested in participating in the HIV Elite Controller Study, please contact Rachel Rosenberg, Research Assistant, at 617-726-5536, or click here to send an e-mail. You can also click here to visit the study's Web site.  

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