Women with HIV most often die from preventable, trauma-related conditions like substance use and mental illness — not the virus itself. Yet, these leading causes are largely missing from official death records, according to new research by UC San Francisco.
The study is the first to compare death certificates to the causes of death identified by doctors, nurses, social workers, and pharmacists who knew them well. HIV was listed as a cause of death in 68% of cases, but the health care providers found that HIV played a role in just 15%. The providers, on the other hand, identified the leading causes of death as mental illness and substance use, each of which was implicated in 58% of deaths. Yet death certificates listed these causes in only 5% and 13% of cases, respectively.
The researchers said the findings support establishing broader goals for HIV care than simply trying to control the virus.
"There's been a longstanding belief that it's HIV — the virus itself — that is driving illness and death, but that ignores the primary causes of death in people living with HIV now," said Edward Machtinger , MD, who co-directs the Women's HIV Program at UCSF. He is the senior author of the paper, which appears June 12 in the Journal of Acquired Immune Deficiency Syndromes .
"Helping women with HIV survive," he added, "requires a focus on healing from the many conditions related to past trauma — addiction, depression, stigma, isolation — much more so than focusing on getting people on antiretrovirals and having their viral load go down."
"This model of trauma-informed health care should be standard"
Since the mid-1990s, new combined drug regimens have transformed HIV infection from a death sentence into a chronic but manageable condition. But despite that progress, U.S. women with HIV still have an overall life expectancy about 12 years shorter than those without HIV. Men with HIV also have shortened life spans, with some data suggesting similar reasons.
The study analyzed the experiences of 40 women who had been cared for at UCSF's Women's HIV Program and died between 2004 and 2023. Only the women whose providers were still at the clinic to participate in the research were included.
The study found many instances in which the providers' understanding of what happened to their patients diverged significantly from what was depicted in the death records.
For example, the death records listed suicide in 3% of the cases, compared to 13% identified by clinicians.
Cigarette use, intimate partner violence, treatment non-adherence, or the inability to follow medical advice, and HIV stigma, or a fear of discrimination that keeps people from seeking care, were all common causes of death identified by the clinical team, but they did not appear on any death certificates.
"Because of what we learned, we have designed all of our care and services to help our patients feel safe and heal from past trauma," said study co-author Katy Davis, PhD, a social worker and trauma therapist who co-directs the clinic. "This model of trauma-informed health care should be standard for everyone with HIV so they can have long healthy lives."
Authors: Other authors include Yvette P. Cuca, PhD, MPH; Martha Shumway, PhD; Emmy Naranjo-Cabatic, MS; and Jennifer Cocohoba, PharmD, all of UCSF; and Vishalli Loomba, MD, MPH, of UCLA.
Funding: Funding for the study came from the Mose J. and Sylvia Dilman Firestone Charitable Trust.
About UCSF: The University of California, San Francisco (UCSF) is exclusively focused on the health sciences and is dedicated to promoting health worldwide through advanced biomedical research, graduate-level education in the life sciences and health professions, and excellence in patient care. UCSF Health , which serves as UCSF's primary academic medical center, includes among the nation's top specialty hospitals and other clinical programs, and has affiliations throughout the Bay Area. UCSF School of Medicine also has a regional campus in Fresno. Learn more at ucsf.edu or see our Fact Sheet .
