When Dr. Edward Machtinger and his team at UC San Francisco's Women's HIV Program reviewed the death certificates of women they had cared for, they found a striking disconnect from what they knew to be true. Over nearly two decades, official records told one story; the lived experiences of patients told another.
The study, published in June 2024 in the Journal of Acquired Immune Deficiency Syndromes, examined 40 women who died between 2004 and 2023 while under care at UCSF. The researchers did something unusual: they compared what death certificates listed as causes of death with what the doctors, nurses, social workers, and pharmacists who knew these women well actually observed. The findings challenge a foundational assumption about HIV mortality.
HIV was recorded as a cause of death in 68% of the death certificates examined. But the healthcare providers—the people who had treated these women—identified HIV as playing a role in only 15% of those same deaths. The actual culprits, according to the clinical teams, were far more preventable. Mental illness and substance use were each implicated in 58% of deaths. Yet these appeared on death certificates in only 5% and 13% of cases, respectively.
The gaps extended further. Suicide showed up in just 3% of official records, despite clinicians identifying it in 13% of cases. Cigarette use, intimate partner violence, HIV stigma, and treatment nonadherence—all common threads in the women's deaths—appeared on no death certificates at all. The disparity reveals not just paperwork errors, but a fundamental misalignment between how we categorize death and what actually drives it.
"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," Machtinger said in the study's release. His message reframes what healing looks like. Since the mid-1990s, combination antiretroviral therapies transformed HIV from a death sentence into a manageable chronic condition. That medical triumph is real. Yet despite this progress, U.S. women with HIV still face life expectancy roughly 12 years shorter than those without the virus—a gap rooted not primarily in viral control but in untreated trauma and its cascading consequences.
Katy Davis, Ph.D., a social worker and trauma therapist who co-directs the Women's HIV Program, framed the implications plainly: "Helping women with HIV survive 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."
The UCSF team has already begun reshaping their clinic around these insights, designing all care and services to help patients feel safe and heal from past trauma. They are calling for this trauma-informed model to become standard practice across HIV care. The research suggests that the measure of HIV treatment success cannot be viral load alone—it must include addressing the deeper, often hidden causes of premature death. Until official death records and clinical reality align, the true story of why women with HIV are still dying early will remain largely untold.