Women with HIV most often die from preventable trauma-related conditions, such as drug use or mental illness, rather than the virus itself. But these leading causes are largely missing from official death records, according to a new study from the University of California, San Francisco.
This study is the first to compare death certificates with causes of death determined by doctors, nurses, social workers, and pharmacists who knew them. Although HIV was listed as the cause of death in 68% of cases, health care providers found that it was involved in only 15% of cases. Meanwhile, health care providers identified the leading causes of death as mental illness and drug use, each contributing to 58% of deaths. However, these causes are listed on the death certificate in only 5% and 13% of cases, respectively.
Researchers said their findings support setting broader goals for HIV care, rather than simply trying to control the virus.
“There has been a long-standing belief that it is HIV, the virus itself, that causes illness and death, but that currently ignores the leading cause of death for people living with HIV.,” said Edward Machtinger, MD, co-director of the Women’s HIV Program at UCSF. He is the lead author of the paper, which will be published in the journal June 12. Journal of Acquired Immune Deficiency Syndrome.
”Helping women living with HIV survive” he added. “Rather than focusing on giving people antiretroviral drugs to reduce their viral load, we need to focus on curing many of the symptoms associated with past trauma, including addiction, depression, stigma, and isolation.”
“This model of trauma-informed medicine should become the standard.”
Since the mid-1990s, new combination drug therapies have transformed HIV infection from a death sentence to a chronic but manageable condition. However, despite such advances, life expectancy for women with HIV in the United States is still about 12 years lower than for women without HIV. Men with HIV also have shorter lifespans, and some data suggests a similar reason.
The study analyzed the experiences of 40 women who received care at UCSF’s Women’s HIV Program and died between 2004 and 2023. Only women whose health care provider was still in the clinic to participate in the study were included.
The study found many instances where health care providers’ understanding of what happened to their patients diverged significantly from what was portrayed in death records.
For example, death records listed suicide in 3% of cases, whereas it was identified by clinicians in 13%.
Tobacco use, intimate partner violence, noncompliance with treatment or inability to follow medical advice, and HIV stigma, or fear of discrimination that prevents people from seeking treatment, were all common causes of death identified by clinical teams but not listed on death certificates.
”Because of what we have learned, we have designed all of our care and services to help patients feel at ease and recover from past trauma.,” said Dr. Katie Davis, study co-author, social worker, and trauma therapist who co-directs the clinic.This model of trauma-informed medicine should become the norm so that everyone living with HIV can live a long and healthy life. ”
sauce:
University of California, San Francisco
Reference magazines:
Jerusalem, Machtinger, Others. (2026) Causes of death in HIV-infected women: Interdisciplinary primary care teams and death certificate discrepancies. JAIDS Journal of Acquired Immune Deficiency Syndrome. DOI: 10.1097/QAI.0000000000003869. https://journals.lww.com/jaids/fulltext/2026/07010/causes_of_death_of_women_with_hiv__discordance.3.aspx
