Causes of Death of Women With HIV: Discordance Between Interdisciplinary Primary Care Teams and Death Certificates

Abstract

Background: – The unadjusted life expectancy of U.S. women with HIV is 12 years less than U.S. women without HIV. Understanding how women with HIV die is necessary to reduce this disparity but is compromised by well-documented flaws with death certificate data.Setting: – University of California, San Francisco Women's HIV Program.Methods: – Using a period cross-sectional design, we compared multiple causes of death in women with HIV determined by structured meetings of an interdisciplinary clinic team with multiple causes of death listed on death certificates. We included deaths occurring between 2004 and 2023.Results: – The study included 40 women (38 cisgender, two transgender) with HIV. The clinic team identified substance use and mental illness as the most common causes of death, each occurring in 58% of cases (n = 23). Death certificates included substance use in 13% (n = 5) of cases and mental illness in only 5% (n = 2) of cases. By contrast, death certificates identified HIV/AIDS as the most common cause of death, occurring in 68% (n = 27) of cases, although the clinic team determined it was a cause of death in only 15% (n = 6).Conclusion: – To track the epidemic and guide resource allocation, death certificate data should be supplemented with information from providers with in-depth knowledge of each patient. To improve life expectancies of women with HIV, it is necessary to move beyond a biomedical focus on viral suppression to robust efforts to address mental and behavioral health. We include several policy recommendations to reach this goal, including extending the HIV Care Continuum to include “survival”.