Remembering Loreen Willenberg, HIV Advocate Who Expanded the Boundaries of Cure Research

amfAR deeply mourns the passing of Loreen Willenberg, who generously shared her unique insights about living with HIV and graciously worked with researchers seeking to understand the role of the immune system in developing a cure. In doing so, Loreen helped expand the boundaries of HIV cure research.

Known initially as the San Francisco Patient, Loreen Willenberg was diagnosed with HIV in 1992, but, unlike almost all people living with HIV, was able to keep her virus undetectable and immune cell count high without ever taking antiretroviral therapy. In 2006, she became the first person to publicly share her experiences as an “exceptional elite controller,” an individual with a rare ability to control HIV naturally. That same year, she launched the Zephyr Foundation to share information about and create an interactive site for people who could spontaneously control HIV. As an HIV advocate, Loreen shared her experiences in public forums, lent her expertise to community advisory boards, and participated in multiple clinical HIV research studies for over two decades.

Among her collaborations with the research community, Loreen worked with amfAR grantees Drs. Xu Yu and Matthias Lichterfeld, of the Ragon Institute of MGH, MIT, and Harvard, who in 2020 announced that they were unable to find any intact HIV in her body despite searching in more than one billion cells. Recently, Dr. Yu has shared that she believes Loreen was cured of HIV.

“I still worry about the 40 million-plus people [living with HIV]…individuals who need to be on the medications,” Willenberg said of her dedicated participation in clinical research. “I want to help… [and] I’m being given an opportunity to help in a really big way. And that’s why I walk in gratitude.”

A professional landscape designer and contractor with a background in botany, Loreen went back to school late in life to study bioethics and earned degrees in the Humanities & Interdisciplinary Arts and the Social Sciences at Sacramento City College in 2017. After she retired, she continued her advocacy, recently joining advocates to decry the dismantling of the HIV research and care infrastructure in the U.S. In her last years, Loreen battled lung and brain cancer and remained HIV-free despite immune-suppressing cancer treatment but continued to work with HIV scientists in this new phase of her life.

We at amfAR are eternally grateful for Loreen’s inspiring contribution to the HIV community and to science.

---