Women with HIV most often die from preventable, trauma-related conditions such as substance use and mental illness, rather than the virus itself, according to new research by UC San Francisco published on June 12. The study found that these leading causes are largely missing from official death records.
Researchers compared death certificates to causes of death identified by doctors, nurses, social workers, and pharmacists familiar with the patients. While HIV was listed as a cause of death in 68% of cases on official records, health care providers determined that HIV played a role in only 15%. Providers identified mental illness and substance use as leading causes of death, each implicated in 58% of cases. However, these were listed on death certificates in just 5% and 13% of cases, respectively.
The findings support establishing broader goals for HIV care beyond controlling the virus. Edward Machtinger, MD, co-director of the Women's HIV Program at UCSF and senior author of the paper published in the Journal of Acquired Immune Deficiency Syndromes on June 12, said: "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." He added: "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."
Since the mid-1990s combined drug regimens have transformed HIV infection into a chronic but manageable condition. Despite this progress, U.S. women with HIV still have an overall life expectancy about 12 years shorter than those without HIV; men also experience shortened lifespans for similar reasons.
The study analyzed experiences of 40 women who had been cared for at UCSF's Women's HIV Program between 2004 and 2023 whose providers were still present at the clinic to participate in research. There were significant discrepancies between provider accounts and what appeared on official records—for example, suicide was recorded in only 3% of cases versus clinicians identifying it in 13%. Causes such as cigarette use, intimate partner violence, treatment non-adherence or inability to follow medical advice due to stigma or fear did not appear at all on any death certificates despite being commonly cited by clinicians.
Katy Davis, PhD—a social worker and trauma therapist who co-directs the clinic—said: "Because of what we learned we have designed all our care and services to help our patients feel safe and heal from past trauma. This model of trauma-informed health care should be standard for everyone with HIV so they can have long healthy lives."
