In Her Own Words: Honoring Loreen Willenberg's Generous Contribution to Science and Humanity
Year: 2026
Type: article
Abstract: Loreen Willenberg, also known as the “San Francisco patient,” was an exceptional elite controller of human immunodeficiency virus (HIV) who made an extraordinary contribution to science through her participation in the Last Gift study at the University of California, San Diego, which focuses on understanding HIV persistence at the end of life. As one of only a few individuals, and among very few women, believed to have cleared HIV without treatment, Loreen's story was extraordinary. Yet it was her generosity and unwavering commitment to others that truly defined her. Beyond her scientific contributions, Loreen was the founder of the Zephyr Foundation, a nonprofit organization dedicated to advancing research on elite controllers of HIV and furthering the broader understanding of the immune system. She approached this work with deep respect for the scientists she collaborated with, profound gratitude to her doctors, and an enduring love of nature. Over many years, Loreen gave her time, her trust, and her entire self to research, helping to advance the search for an HIV cure. To those who knew her, Loreen was far more than a study participant: She was a partner in discovery, a teacher, a thoughtful voice in bioethics, an extraordinary friend, a gardener, and a source of light. She was a constant reminder of the human purpose at the heart of this work. In her final act of generosity, she chose to donate her tissues through the Last Gift program, ensuring that her contributions to science would continue beyond her lifetime. Loreen's passing is a profound loss, but her legacy lives on in the knowledge she helped create and in the many lives she continues to touch. In her own words, she reflects on her journey, her motivations, and what it meant to contribute to something greater than herself. The reflections below are drawn from an interview conducted before her passing on 6 April 2026. In sharing them, the Last Gift team honors Loreen Willenberg with deepest respect, gratitude, and love. I was diagnosed with HIV on 29 July 1992. At that time, testing and diagnostics were very different than they are today. We had to wait at least 2 weeks for results, and viral load testing was not yet available. Doctors could not measure the quantity of virus in the blood, so we relied on markers, such as CD4 cells, the “generals” that lead the immune system, and CD8 cells, which I think of as the soldiers supporting the generals. These 2 types of cells are critical. HIV enters the CD4 cells, and if the balance is lost, the body becomes susceptible to Acquired Immunodeficiency Syndrome (AIDS). Understanding this difference is vital because people often confuse HIV positivity with AIDS, which has been a major driver of stigma and discrimination over the decades. My diagnosis came at a complicated time in my life. Years later, I would also face a stage 4 metastatic lung cancer and a brain tumor that required delicate surgery. Those experiences gave me an intimate understanding of the fragility and resilience of the human body. But through it all, I never wavered in my commitment to contribute to science and to help researchers understand HIV and the immune system in ways that could save lives. I never took HIV treatment. That was a conscious decision based on an understanding of my body and my immune system. When my doctors recommended antiretroviral therapy, I said no. I knew the guidelines, but I also knew that my case was unique. Early on, my immune system somehow rendered the virus unable to replicate, placing it in what researchers call a “genetic desert.” Bruce Walker and Xu Yu in Boston, Steve Deeks in San Francisco, and Steven McGillis at the US National Institutes of Health (NIH) have each played pivotal roles in advancing our understanding of elite controllers and the pursuit of an HIV cure. In particular, Xu Yu's meticulous work helped illuminate the ways my immune system controls HIV, and I have always respected her for the rigor and compassion she brought to her research. Somehow, very early in my infection, my body spontaneously controlled the virus. That is the Holy Grail of HIV research: understanding how an immune system can do this naturally and translating that knowledge to help others. I often describe it as a gold Cadillac abandoned in the middle of the desert. The car runs out of gas. There are no gas stations anywhere. The virus is still present, but it cannot move or replicate. It is parked. This is what my immune system has done, and it is remarkable. My hope, and my prayer, is that researchers can define this mechanism. If 1 immune system can do it, there must be more like mine. And if we can understand it, maybe we can teach other immune systems to do the same. HIV cure research, for me, is about freedom. Medications have saved millions of lives, but they are not without cost. They are lifelong, they come with side effects, and they cannot fully restore the immune system. My hope is that through the data I have contributed, through the billions of lymphocytes I have donated over 21 years, researchers will find a scalable, safe, and less toxic way to prevent or cure HIV. Whether it is a vaccine or another form of therapy, it must be something that can be applied to the millions of people who are still living with HIV around the world. I carry all of them in my heart every day. I have participated in 13 observational studies over more than 2 decades. I have traveled across the country to contribute tissue and blood samples. I have done sigmoid biopsies, colonoscopies, and countless blood draws. All of this has been voluntary, all of it aimed at giving researchers the data they need. Observational studies may seem quiet, but they are essential. Without them, scientists cannot understand the underlying mechanisms of the immune system. They cannot generate the knowledge that moves the field forward and without that knowledge, the dream of a cure remains out of reach. My journey with HIV has always been intertwined with hope and purpose. I remember reading in POZ Magazine in 2004 about Bruce Walker and the international HIV controller cohort. I was a participant in that legacy cohort. Bill Gates provided significant funding. I understood early on that contributing to research was more than personal: It was part of a larger mission, one that spans decades and crosses continents. Beyond HIV, I faced other health challenges. In July 2022, I was diagnosed with stage 4 metastatic lung cancer, and a subsequent magnetic resonance imaging scan revealed a tumor in my brain. That surgery in March 2023 was delicate. My neurosurgeon, Dr. Orin Bloch, performed the operation with extraordinary skill and precision. I remember waking from anesthesia with relief, knowing that the tumor had been successfully removed. It was another reminder of the fragility of life and the importance of contributing to something larger than oneself. Through all these challenges, I never lost sight of my commitment to research. I participated in the Last Gift study at the University of California, San Diego, which focuses on HIV persistence at the end of life. This study allows participants to donate tissues and organs after death, contributing to critical research that cannot be done otherwise. For me, it was an opportunity to extend my legacy, to continue helping researchers even after I am gone. I made this decision because I am devoted to the search for an HIV cure. I understand that my immune system is unique, and I hope that by studying it, scientists can find ways to replicate this extraordinary phenomenon in others. The Martin Delaney Collaboratories for HIV Cure Research has even labeled the mechanism observed in my immune system as “block and lock,” reflecting the way the virus is contained and rendered inactive. My participation is also about community. HIV cure research is not just science; it is about people. It is about freeing millions from the burden of lifelong therapy, about removing stigma, about giving hope. I carry the people living with HIV in my heart every day. I think of them when I contribute to studies, when I share my data, when I answer questions from researchers. Every sample I provide, every research-related trip I make, is a step toward a future where HIV no longer dictates the lives of so many. I have always been guided by a sense of purpose. I joined the Last Gift study knowing that it was the right connection, the right path. I knew the people involved, the quality of the team, and the impact we could make together. My family; my primary care provider, Dr. Stuart Cohen; and my loved ones have been incredibly supportive of this decision. My goal has always been to contribute, to help define a mechanism that may one day allow scientists to remove the need for lifelong antiretroviral therapy. I also founded the Zephyr Foundation, a project close to my heart, to support research and community efforts in HIV and immune system studies. Creating the Zephyr Foundation allowed me to give back in ways beyond my own participation, to help others have a platform for contributing, learning, and making a difference. I have learned that hope, purpose, and generosity are intertwined. Every donation, every participation in research, is a gift, not just of tissue, but of trust, of intention, of vision for a future free of HIV. Without these contributions, the data to guide science would be far more limited. And without data, there can be no progress. I also believe in the importance of skepticism. It raises the standard, challenges assumptions, and ensures that research is rigorous. Science thrives when questions are asked and standards are held high. My hope is that my participation continues to strengthen that pursuit, to push the boundaries of understanding, and eventually deliver a cure. I remember Timothy Ray Brown, the Berlin patient, who showed the world that a cure for HIV was possible. His courage and the dedication of the scientists who treated him continue to inspire me. I honor his legacy every time I participate in research, every time I donate tissue or answer questions for scientists trying to understand HIV control. Through all my experiences, I have remained fascinated by the elegance of life. Ultimately, this is about something larger than myself. It is about leaving a legacy, about contributing to knowledge that may save millions of lives. It is about making sure that even after I am gone, the work continues. I have chosen to donate my body through the Last Gift program so that my contributions to science can extend beyond my lifetime. My family, my blood relatives, and my extended chosen family support this decision. They understand the importance of contributing to a cause that matters. HIV cure research is everything to me. It represents the possibility of understanding the block and lock mechanism, of translating it into therapies that are scalable, safe, and effective. It is the embodiment of hope, of human ingenuity, of compassion applied to science. My prayer is that I live to see the day when this miracle becomes reality: a world where people no longer live under the shadow of HIV, where treatment is no longer lifelong, and where the promise of a cure is realized for all. Through all of my experiences, the diagnosis, the treatments I declined, the cancers I faced, the surgeries I underwent, I have remained committed to this mission. My immune system may be unique, but my dedication is universal. It is about humanity, about the power of giving, and about ensuring that the knowledge we create today can save lives tomorrow. I am proud of the contributions I have made, and I am humbled by the extraordinary people who have guided and supported me along the way: my doctors, my researchers, my friends, my family, and the scientists dedicating their lives to this cause. I hope my story, my immune system, and my participation in research serve as a reminder that 1 person can make a difference, that generosity and courage can leave a lasting mark, and that the pursuit of knowledge and healing is the highest form of love we can offer each other. To contribute to the cure of HIV. To make a difference, even beyond my lifetime. That has been my mission. That has been my life. Loreen Willenberg Sacramento, CA Acknowledgments. Two weeks before her untimely passing, Loreen Willenberg, at her request, was interviewed by Cheryl Dullano, who recorded her words. As a member of the Last Gift community and founder of the Zephyr Foundation, Loreen wished for her reflections to be shared with the scientific community, particularly the HIV community she had long served. Her words are presented here as her remarkable Epilogue Reflections. They were edited for clarity by Karine Dubé prior to publication. We also want to acknowledge the entire Last Gift Team: Cheryl Dullano, Stephanie Solso, Robert Deiss, Jeff Taylor, Andy Kaytes, Lauren Wan, Samuel Ndukwe, Whitney Tran, Davey Smith, and Sara Gianella, among many others, as well as our supportive community. Financial support. We are immensely grateful for the support received from amfAR—The Foundation for AIDS Research, particularly for logistical and scientific support related to Loreen Willenberg's participation in the Last Gift. We also acknowledge support received from P01 AI131385 (Smith—Revealing Reservoirs during Rebound [R3] Last Gift, Early Treatment Interruption) and P01 AI169609 (Smith—Leaving, Coming and Staying HIV Obligate Microenvironments [HOME]). This work was also supported from UM1AI164570 (BEAT-HIV Collaboratory), which is co-supported by the National Institute of Allergies and Infectious Diseases (NIAID), the National Institute of Mental Health (NIMH), the National Institute of Neurological Disorders and Stroke (NINDS), the National Institute on Drug Abuse (NIDA), and the Robert I. Jacobs Fund of The Philadelphia Foundation. This research was supported by the San Diego Center for AIDS Research (SD CFAR), an NIH-funded program (P30 AI036214), which is supported by the following NIH Institutes and Centers: NIAID, National Cancer Institute (NCI), NHLBI, National Institute on Aging (NIA), Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), NIDA, NIDCR, NIDDK, NIMH, NIMHD, NINR, Fogarty International Center (FIC), and Office of AIDS Research (OAR).
Authors: Loreen Willenberg, Karine Dubé
Language: English
Topic: HIV Research and Treatment
Subfield: Virology
Field: Immunology and Microbiology
Domain: Life Sciences
Open Access status: green
Funders: NHS Innovation Accelerator, Harvard University Center for AIDS Research, Philadelphia Foundation, National Institute of Development Administration, Fundación Interhospitalaria para la Investigación Cardiovascular, National Institutes of Health, National Cancer Institute, Cairo University, National Heart, Lung, and Blood Institute, National Institute of Mental Health, National Institute on Drug Abuse, National Institute of Nursing Research, National Institute of Allergy and Infectious Diseases, National Institute of Diabetes and Digestive and Kidney Diseases, National Institute of Neurological Disorders and Stroke, National Institute of Dental and Craniofacial Research, National Institute on Minority Health and Health Disparities, Eunice Kennedy Shriver National Institute of Child Health and Human Development, NOAA Research
Award: G7761394893
OpenAlex ID: W7156038501