Lack of community and awareness makes HIV stigma in women “much more profound” in women than in gay men

Women with HIV often carry a heavier, more isolating form of stigma than other groups affected by the virus, according to Edward Machtinger, M.D., professor of medicine at the University of California, San Francisco, director of the Center to Advance Trauma-Informed Healthcare and codirector of the university's Women's HIV Program.

In this video, Machtinger discusses how stigma uniquely affects women with HIV and what it takes to help patients move from isolation toward engaged, consistent care.

Part of the problem, Machtinger said, is that women often lack the sense of community that has helped normalize HIV within the gay male community. Women who are diagnosed frequently associate the virus with a population they do not identify with and struggle to understand how they contracted it, which he said can leave them feeling isolated and confused regardless of race or background. Many of his patients, he said, have not disclosed their status to anyone.

That secrecy carries real clinical consequences. Machtinger said patients who cannot be open about their diagnosis often struggle to take medication around others, avoid bringing home literature that identifies a doctor's office, and delay hospitalization out of fear that their status will be discovered. Helping patients become more comfortable with their diagnosis and disclose it to family and friends, he said, changes the trajectory of their care: patients who come out are more likely to attend clinic visits, connect with other people living with HIV and take medications consistently, which Machtinger said leads to substantially better outcomes.

Machtinger is also senior author of “Causes of Death of Women With HIV: Discordance Between Interdisciplinary Primary Care Teams and Death Certificates,” recently published in the Journal of Acquired Immune Deficiency Syndromes, part of a broader body of research examining how women with HIV are cared for and understood by their treatment teams.