Women with HIV face a stigma that is both heavier and more isolating than what other groups experience, according to Edward Machtinger, a professor of medicine at the University of California, San Francisco and director of the Center to Advance Trauma-Informed Healthcare.
Machtinger, who also co-directs UCSF’s Women’s HIV Program, said the lack of community support sets women apart. Unlike the gay male community, where HIV has become more normalized, women often don’t see themselves reflected in the broader conversation about the virus. Many struggle to understand how they contracted it and feel disconnected from the populations they associate with HIV.
Secrecy and its clinical costs
The isolation isn’t just emotional—it has real consequences for their health. Machtinger said patients who keep their diagnosis hidden often skip medication when others are around, avoid bringing home materials from their doctor’s office, and delay hospital visits out of fear their status will be exposed. That secrecy, he said, can derail their care.
When patients do open up to friends or family, their treatment improves. Those who disclose their status are more likely to attend clinic visits, connect with other people living with HIV, and take their medications consistently. Machtinger said the shift leads to substantially better outcomes.
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The issue isn’t limited to stigma alone. Machtinger’s recent research, published in the Journal of Acquired Immune Deficiency Syndromes, found discrepancies between how interdisciplinary primary care teams and death certificates recorded the causes of death for women with HIV. The findings suggest gaps in how these patients are understood and cared for, even by those treating them.
Breaking the cycle of silence
Machtinger’s work highlights a paradox: the same secrecy that patients use to protect themselves often ends up harming them. The challenge, he said, is helping women feel safe enough to disclose their status without fear of judgment. That requires not just medical support, but a cultural shift in how HIV is perceived—and who is seen as affected by it.
For now, Machtinger said small changes—like offering discreet appointment reminders or counseling on how to disclose to loved ones—can make a difference. But the bigger problem, he added, is that women with HIV are still fighting to be seen as more than just a statistic.
