Rae Lewis-Thornton is an AIDS activist who has been living with HIV for 38 years and author of “Unprotected: A Memoir.”
As HIV/AIDS surged in previous decades, the government scrambled to address the strange illness that seemed to afflict mostly men who had sex with men. In fact, it was first referred to as “gay-related infectious disease,” or GRID, and other names that resulted in people viewing it as a “gay disease” for decades.
I fear we are making the same messaging errors with monkeypox. Yes, the vast majority of cases so far are among men who have sex with men. But history has taught me that no singular community is exclusively at risk for a disease.
The near-exclusive emphasis on gay men regarding HIV/AIDS set up the public health response for failure in two respects. First, it heaped stigma, shame and blame on gay men like a truckload of garbage dumping at a waste site. Sen. Jesse Helms (R-N.C.) even proposed isolating people living with the disease like a leper colony.
Second, it left other groups — especially Black and Brown women — with a false sense of security. Many women, myself included, believed that we couldn’t contract HIV. “I’m not gay, and I certainly do not have sex with gay men,” we would think. “Therefore, I am not at risk.”
By the time we learned that many men who had sex with men also had sex with women, thousands of women had contracted the virus. Black women made up the majority of AIDS cases among women in the United States. I was one of them.
Many of these women contracted the virus because of a culture known as the “down low.” That included men who lived double lives and men coming home from prison, who didn’t consider themselves gay and returned to their heterosexual relationships, with HIV in tote. Women also contracted HIV from their partners who used intravenous drugs. Additionally, about 52 percent of women contracted HIV from their own drug use. Neither had anything to do with men who had sex with men.
Even after it was understood that HIV was not exclusive to men who have sex with men, by and large the information campaign and the medical community held on to their gay-centered approach, with grave consequences for treating women living with HIV/AIDS. Some women went misdiagnosed because their symptoms didn’t match those seen in gay men with AIDS.
Even the initial definition of AIDS was shaped by how the disease presented itself in men, locking women out of critical government benefits because we didn’t meet the “criteria” of having AIDS. An HIV-infected man with recurrent candidiasis in the throat, for example, qualified for disability, while an HIV-infected woman with cervical cancer and a low T-cell count did not. The definition was finally changed in 1993 to include women, almost 12 years into the pandemic. Even when I applied for disability benefits two years after the definition was changed, with an extremely low T-cell count, I was still denied.
This is personal for me. By the time I transitioned to AIDS in 1992, we were 11 years into the pandemic and there had not been one study in the United States on women living with the disease. Steeped in misogyny, women mattered only when it came to mother-child transmission.
While there is still much we don’t know about monkeypox, unlike HIV/AIDS, it is not a sexually transmitted disease. The Centers for Disease Control and Prevention says it is transmitted primarily through bodily fluids; close skin-to-skin contact when a blisterlike sore is present, including cuddling, kissing and sex; and coming in contact with clothes, bed linens and towels of an infected person. That is not limited to intimacy between men. As result, public health officials warn that the virus could begin spreading more broadly.
Winston Churchill said it best: “Those who fail to learn from history are condemned to repeat it.” We know from history how the medical communities’ emphasis on the health of gay men made it easier for the general public to believe that a “scary” disease was someone else’s problem. I already see it happening. People want to believe that it is someone else’s disease until it happens to them. And the sad truth is that while humans discriminate against people, viruses do not.