Photo by Bob Roehr
Few people have done as much for HIV research as Loreen Willenberg, but she’s not a scientist and few people even know her name. She represents the smallest minority within the HIV-positive community — and has often felt utterly invisible in the decades since her diagnosis —and yet she is having such an outsized impact that she could literally go down in history as the key to curing HIV.
Known as an elite controller, Willenberg is HIV-positive but asymptomatic. That hasn’t made her any less of an HIV advocate. In addition to volunteering as Guinea pig for dozens of studies, she founded the Zephyr Foundation, a nonprofit organization for people like her, which serves as not only a support group and advocacy organization but also connects researchers with highly prized subjects.
Robert Reinhard, one of the people who nominated Willenberg, works with CanCURE (the Canadian HIV Cure Enterprise) and the Ontario HIV Treatment Network. Reinhard says Zephyr Foundation is “committed to the development of knowledge of how their unique immune functions may be of benefit to all people with HIV.”
“She is a self-made person in her advocacy,” Reinhard adds about Willenberg, “Very modest and focused—and really all on her own helped this community get on the map for purposes of engaging the investigators collaboratively. She evolves with the work at hand and has contributed to the expanding interest in HIV cure research. She hasn’t had an easy road, doesn’t ask favors from people—she just keeps her eye on the prize without seeking the limelight.”
In this exclusive interview, Willenberg talks about HIV stigma, being invisible, returning to college after 40 years, and the quest for the cure.
What has it been like having HIV without symptoms?
I’ve been fortunate that my immune system has been able to ward off any ill effects from HIV for twenty-four years. This does not mean I take it for granted, though. I take care of myself—good rest, good food, exercise, see my doctor regularly—and maintain a positive attitude.
Do you still feel HIV stigma?
I’m dismayed that stigma continues to be a problem for those of us who live with HIV, and think that education is the best way to combat it. Being open about my experience as a person with HIV has led to remarkable discussions that have fostered better understanding and compassion on both sides.
Do you feel a sort of invisibility as a person with HIV?
In the years before my designation as an elite controller of HIV in 2004 — by the International HIV Controller Study in Boston, Massachusetts) — I felt invisible because I was a woman living with HIV. For example, in 1992, the year of my diagnosis, and until the early 2000’s, support groups for women were virtually non-existent unless you lived in New York, Los Angeles, or San Francisco. In addition, the mainstream media kept the focus on gay men to the exclusion of other genders...despite escalating rates of infections among women. In fact, women were barely represented in clinical studies of HIV or drug trials for the treatment of HIV during this time.
What I find interesting is the fact that out of the approximately 4,700 individuals who have been identified as an HIV Controller or Long Term Non-Progressor since 2005 and who participate in one or more clinical studies investigating the natural control of HIV infection, less than 9 percent — [about] 42 individuals — have gone public about their unique status. Of these, only 5 are women [according to] Zephyr Foundation archived data.
I believe these numbers portray the general invisibility of HCs/LTNPs, and, historically speaking, reflect that women continue to be an invisible population within the AIDS epidemic.
How has having HIV changed your life?
I was a strong person before learning that I was HIV-positive, but I’m even stronger now. I say this because living with HIV has taught me how to be a survivor, to be tenacious, and to confront obstacles and adversity head-on.
Living with HIV has also connected me to some of the most amazing people — in community and outside of community — that I may not have known otherwise. It has been a privilege to meet and work with many courageous and selfless HIV/AIDS activists who are relentless in their dedication to represent people living with HIV and AIDS. I am so grateful for what they have taught me over the years! It has been a distinct honor, too, to learn about the wonder of the human immune system from brilliant and dedicated research scientists who work tirelessly to improve the quality of life for those living with HIV.
I think the most important way that HIV changed my life was its influence on my decision to return to college after a forty-year absence. After many years as an advocate for the HIV/AIDS community and a participant of many clinical studies, I wondered how I could be of more service to others. A serendipitous event led me to an interest in bioethics, which in turn led me back to school to attain an advanced degree in the field. As of this writing, I have completed five years of study and will soon transfer to the University of California at Davis to further my education toward the main goal.
Congratulations! How many studies you've been involved in?
I have participated in more than one-dozen clinical studies, including the International HIV Controllers Study at Harvard Medical School, the Long-term Nonprogressor Study at the National Institutes of Health, and various studies conducted by the University of California at Davis and University of California San Francisco — SCOPE and Jay Levy’s laboratory — since 2004.
Why do you do these studies?
I have participated in multiple clinical studies because I care about the PLWHA community, and understand that important scientific discoveries about HIV are made through the involvement of study participants.
I have every confidence that the efficiency of the HC/LTNP immune system against HIV will soon be conveyed to others through a therapeutic vaccine or by new approaches to manage HIV infection and a cure for HIV.
What have you learned?
It’s difficult to encapsulate everything I’ve learned since I joined my first clinical study in 2004, but I do know that the research field is getting closer to understanding the internal processes at work within us that keep HIV at bay. These processes are complex and there are many of them; the wheel of science turns slowly in this regard.
Briefly, I have learned that:
• HCs/LTNPs are studied in 21 different countries;
• Estimates are that 4 in 10,000 people living with HIV may be an HC/LTNP;
• Consensus is building that there are two distinct groups of HCs, one is indistinguishable from HIV-negative individuals — no inflammation/immune activation, or cell exhaustion;
• Control mechanisms vary between group members;
• Genetic make-up may contribute to natural control of HIV;
• Natural control may involve signaling processes between immune cells;
• A large proportion of HCs/LTNPs possess incredibly efficient CD8+ T cells called cytotoxic T-lymphocytes, or CTLs, that are able to destroy CD4 cells infected by HIV;
• A tiny minority of HCs/LTNPs do progress to AIDS;
• Empirical evidence indicates that onward transmission of HIV by HCs/LTNPs is highly unlikely.
Some people have suggested that you – and others like you – may be key to an HIV cure. Do you feel a lot of responsibility with that “title”?
I’m very humbled by the suggestion that HCs/LTNPs may indeed hold the key to an HIV cure. I believe that my unique community has, and is, contributing valuable clues toward the development of vaccines and new approaches for managing HIV infection, and that we may represent what is called a “functional cure” for HIV. What’s important to me is that news of this kind gives people hope that alternatives to a life-time of medications is on the horizon, that they will be released from the need to take daily doses of medicine or face the risk of future health problems caused by long-term use of antiretroviral medications.
I think it’s remarkable that I am able to help advance scientific knowledge that will improve the lives of millions of people living with HIV. I have not viewed this opportunity as a responsibility, but a privilege and an honor. If my donations to clinical studies produce positive outcomes, reduces suffering, improves the quality of life for others, then I will rejoice in having lived a good life!
When you’re not involved in scientific research, what do you do?
My life is very full and divided between college studies, trips to scientific conferences, memberships to community advisory boards — meetings, teleconferences and webinars — speaking engagements, reading, listening to classical music and jazz, tending my collection of container plants and two adopted kittens, Maui and Lil. I continue to operate the Zephyr LTNP Foundation, and to refer HCs/LTNPs to clinical studies when someone asks.
What is the achievement you are most proud of? What do you hope to accomplish next?
I’m proud of my decision to return to college, and that I’m an inch away from earning my first undergraduate degrees — AA in Humanities, AA in Social Sciences. It’s hard work and quite a challenge for a woman who is near “retirement age”, but I’m determined to go the distance and attain my BA in philosophy at the University of California at Davis, then continue forward to achieve the Masters in Bioethics. Through the education I acquire, I look forward to representing the PLWHA community as a consultant, to preserve their interests and protect their rights as participants in clinical research studies for an HIV cure.
What do stories about you miss that you'd like readers to know?
I want people to know that the inspiration behind my participation in clinical research studies is the deep desire to see HIV/AIDS become a thing of the past. I look forward to the day that I hear these words: “Loreen, we appreciate your contributions to research, but we’ve beat this thing and you can retire from making donations now!” Until then, I will continue to volunteer as a study participant because it’s the right thing to do.