Beginning with the first wave of diagnoses among gay men in the early 1980s, the notion of HIV/AIDS as a “gay disease” — and one that primarily impacts gay men — has, unfortunately, persisted in the public imagination.

The truth, of course, is that anyone can contract HIV, given the right circumstance, and according to the Yale University Library’s online exhibition “We Are Everywhere: Lesbians in the Archive,” by 1991 roughly 40% of HIV-positive people and 12% of AIDS patients in the U.S. were women. But a combination of longstanding bias in the medical field and the perception of HIV/AIDS as a gay epidemic led to women being excluded from research studies and clinical trials.

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As investigative reporter Gena Corea notes in her 1992 book, The Invisible Epidemic: The Story of Women and AIDS, doctors with the Centers for Disease Control (CDC) initially didn’t even think women could get AIDS, leading to many HIV-positive women dying without ever being diagnosed. As The Well Project notes, until recently, research on women and HIV continued to lag significantly behind research on how the virus impacts men.

In the U.S. today, women account for approximately one in five new HIV diagnoses and 22% of the estimated 1.2 million people living with the virus, according to a Kaiser Family Foundation analysis of CDC data published in 2024.

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Black women in the U.S. account for roughly half of all new HIV diagnoses among women, as Rep. Maxine Waters (D-CA) noted in a recent House resolution to recognize National Black HIV/AIDS Awareness Day. As of 2021, HIV was the ninth leading cause of death among Black women between the ages of 25–34, KFF reported. An estimated 14% of transgender women are living with the virus in the U.S. today.

In 2022, over 20 million women and girls around the world were living with HIV, according an estimate by the Joint United Nations Programme on HIV/AIDS (UNAIDS) that was reported by The Well Project. In many countries outside the U.S., there are more women living with HIV than men.

Despite these numbers, women living with HIV still face unique barriers and challenges.

Women who experience intimate partner violence (IPV) are at greater risk of contracting HIV, according to KFF research. IPV also represents a significant barrier to women accessing proper treatment after contracting HIV.

Women are also less likely to get tested for HIV, with only 37% of women in the U.S. between the ages of 18–64 reporting having been tested. Among those who do test positive for HIV, 21% are diagnosed with AIDS within three months, suggesting they are not accessing care soon enough, according to KFF.

While HIV is the virus that causes AIDS (acquired immune deficiency syndrome), AIDS is characterized by human blood that has a low level of CD4 cells (T-helper white blood cells that fight infection as part of the body’s immune system). Some doctors diagnose patients with AIDS if their CD4 cell count falls below 200 cells per cubic millimeter — the normal range is 500 – 1,500 cells — or the development of specific opportunistic infections, like pneumocystis pneumonia (a serious lung infection), toxoplasmosis (a dangerous blood parasite), tuberculosis (a contagious infection that can infect the lungs, spine, brain, or kidneys), candida (painful yeast infections), and cytomegalovirus (an incurable lifetime infection that can lead to life-threatening illnesses and other chronic conditions).

In addition to IPV, housing instability, caretaker responsibilities, shame and stigma, and lack of financial and social resources are among the factors that can delay women from getting tested and seeking treatment for HIV, The Well Project reports.

HIV also affects women and birthing people’s reproductive health, according to KFF. It can impact menstruation and fertility and increase the risk of complications during pregnancy. Antiretroviral drugs can also impact the effectiveness of contraceptives.

Fortunately, treatment and prevention, such as PEP and PrEP, has been shown to be as affective for women as it is for men — though side effects may differ, according to the Well Project. And in 2024, research published in the New England Journal of Medicine showed that a twice yearly injection of the drug Lenacapavir can provide total protection against HIV infection in women and girls.

Meanwhile, organizations like the Well Project are dedicated to providing information and resources about HIV to women across the gender spectrum, and building community among those affected by the virus. Through their efforts, they pledge that women will never be “an afterthought” in the fight against HIV/AIDS.  

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