It took Loreen Willenberg nearly 10 years after her HIV diagnosis to write “I am HIV-positive.” When her name first appeared in the March 2001 issue of POZ, Willenberg was still closeted in her small town life working as a landscaper. Five years later, her name and her story were all over the world press as a spokesperson for an international HIV study. Now she is launching a foundation and website to attract others to the study and help them enter clinical trials. Willenberg tells POZ what happened between 1992 and 2006 to convince her to shed her veil of anonymity and become a world-class HIV advocate.

What kept you from disclosing that you were HIV-positive when you were diagnosed in 1992?

I lived in a very small town, Placerville, California. It had been a center of the gold rush in the 1800s. To give you an idea of the town culture, for years there was a hangman’s tree on Main Street, and there’s still a bar called the Hangman’s Tree. The town itself used to be called Hangtown. I have been a landscaper for 23 years, and I was afraid of losing my landscape business in this town in the hills.

Did you become ill after testing positive?

Never – and that’s part of the story. My CD4 count has never dipped below 1,700 [despite the fact I’ve not taken meds]. And once viral load testing became available, I was always undetectable, too.

How did you find out that you are an “HIV elite controller”—and what does that mean?

My physician was stunned that I never lost CD4s. At first, he had never seen that or heard of it. After a few years he told me, ‘I’ve been reading some medical journals, and people are starting to talk about something called longterm nonprogressors.’ He explained what that was—that it meant you remained healthy, didn’t have your CD4 cells fall off without the aid of HIV drugs.

What did you do next?

We looked for any research at all that was being done about cases like mine, so that I could learn more about my own situation and maybe contribute to helping other people with HIV. Eventually we found two studies—one in England, one in Switzerland—looking at longterm nonprogressors. But I couldn’t afford to fly there. I kept searching for a study.  Until 2004, we just waited.

Then one night I got my monthly copy of POZ, opened it up and saw an article with a little notice about a longterm nonprogressor study in Boston, led by Dr. Bruce Walker at Harvard. I burst into tears. The very next day I called my doctor and said, ‘Here we go. This is it.’ I went right down to his office, we called Walker’s group at Partners AIDS Research, and a month later we shipped my blood off to the study. I’d found my place—I realized that by being in the study, having my immune system analyzed, I could help advance the science, help maybe even find a vaccine to treat HIV, if not one to prevent it.

When we first talked back then, you told me you felt lonely because of your unusual HIV situation.

I felt lonely having HIV at all, at first. Strangely, it was learning that I was one of a subset of the global HIV community that are naturally suppressing this virus that ended up making me feel less alone. About a year after I first got connected with the Walker study, I told one of the researchers that I’d never had a conversation with another HIV-positive woman. The researcher put me in touch with a woman in Brooklyn, and that woman told me about the online support available at AIDSmeds.com. I joined AIDSmeds.com forums and found a connection where I could be anonymous and be part of a community. The amazing personalities I met there encouraged and supported me. Their bravery, the stories they told, made my silence—I was still not out as being HIV positive—seem ironic. I’d been afraid. But now I felt I had to unburden myself.

How did you go public?

I decided to do it in the Mountain Democrat, the only newspaper in Placerville, where I still lived at that time. I knew they hadn’t published a story on HIV since 1996. I called the managing editor and asked if she’d be interested in running an interview with an HIV-positive woman. It turned out that she had a journalist interviewing people at an area AIDS Service Organization, the Sierra Foothills Foundation, and it developed into a series of articles about me and two other area women.

And how did people in your community react when they learned that this landscaper had HIV?

My fears were unfounded. As soon as I walked into my local bank after the story came out, the tellers all came out and hugged me, thanking me for telling my story. A lot of my girlfriends came over to my house to [support me and ] get educated. They wanted me to teach them the criteria for safe sex—they didn’t know how to keep themselves safe. I never once experienced a negative reaction.

And then you became known worldwide. Tell me how that happened.

It was actually soon after that—and if I hadn’t decided to tell my story in the Mountain Democrat, I’d have been outed anyway. I had decided to go to the International AIDS Conference (IAC) that year [2006] and appear at a press conference with Dr. Walker announcing that his study was looking for more volunteers. I wanted to help because more of us [in the study] are necessary. The bigger the number of participants, the more likely the researchers are to validate their findings. And if these dedicated scientists can find the way in which we control HIV naturally, they can extrapolate and be on the trail to developing a therapeutic vaccine. That’s the single most important reason why I’m doing this, and why I went to Toronto for IAC 2006.

So I appeared at that press conference, the international press picked it up, and my name was all over the IAC website. It all happened at the same time. I became part of the U.S. HIV community through AIDSmeds, and the global AIDS community through my appearance at IAC.

What have you learned about yourself from being in the Walker study?

I seem to have an unusually robust immune system. My immune cells exhibit some resistance the researchers hadn’t seen before [they analyzed my blood]—way more than the normal range of response. I also connected to some other related longterm nonprogressor studies. I’m in four separate studies, including one at the NIH. In that study, I was shown what some of the research had come up with. I saw a schematic image of my blood, showing a huge proliferation of pathogen-fighting T cells. Now my sister is coming to the NIH with me so that they can examine her blood too.

You are launching a website and an organization to help expand these studies. What do you hope to achieve?

The website is zephyrfoundation.org—Zephyr is my AIDSmeds screen name. We want to assist in expanding recruitment to all the studies. Our site is a way for people to connect to the studies if they are intimidated by clinical research and don’t normally look at clinical trial sites. It’s a middle step.

We also want to provide some connection within the community of HIV controllers. And we want to raise money to help people with travel expenses so that they can afford to travel to study sites if they need to.

What other AIDS projects do you participate in besides trials?

I’m involved in two right now. I’m working on organizing a Ryan White Town Hall meeting, cosponsored by the Sierra Foothills AIDS Foundation, NAPWA [National Association of People With AIDS] and C2EA [Campaign to End AIDS]. It will take place here [in Sacramento, California] on August 7. These meetings have been happening around the nation for the past year and a half, getting input from consumers of Ryan White services in preparation for the 2009 reauthorization of the act [Ryan White Comprehensive AIDS Resources Emergency (CARE) Act].

I’m also helping plan a caravan from Sacramento to Oxford, Mississippi. Why Oxford? The first presidential debate between Barack Obama and John McCain will take place there on September 26. It’s a prime opportunity for people around the country to encourage McCain to endorse our National AIDS Strategy. That’s a platform composed by the HIV community ourselves. Obama has already endorsed it. We think we’ll see 4,000 to 8,000 people around the country participating in this effort.

What inspires you—what image do you carry in your mind and heart when you do all this work?

Well, the studies seem to me to provide the single beacon of hope for people who are not HIV controllers—people who have had it with pills and side effects and worry, who hope to find some treatment that’s less full of problems. In those studies, it’s not about me, it’s about the unique subgroup I represent. In the advocacy work in general, I feel that, if I have this blessing [of being an elite controller], it is your voice that I am always going to remember in my walk. For those who stay undisclosed, who can’t afford to say they are positive, I want to say, ‘I will speak for you.’

For more information:
Zephyrfoundation.org
Hivcontrollers.org
sierrafoothillsaids.org
nationalaidsstrategy.org
campaigntoendaids.org