In the late 1980s, roughly 560,000 Americans found out they’d been infected with HIV. Rae Lewis-Thornton was one of them. 

“At that time they didn’t know if everybody with HIV would transition to AIDS. We just didn’t know that in 87’,” Lewis-Thorton recalls.

Despite the trauma of her diagnosis, she chose to thrust herself into classrooms and auditoriums, educating youth and adults on the illness. She’s taken special interest in advocating for the health of Black women and girls, becoming the first Black woman to speak out about AIDS on the cover of Essence magazine in Dec. 1994.

But now it’s 2022, and despite the work of activists to educate people about safe sex — and despite the existence of pre-exposure prophylaxis (or PrEP), a medicine taken to prevent infection — Black people are still getting and suffering disproportionately from human immunodeficiency virus (HIV) and acquired immunodeficiency syndrome (AIDS). Having spent nearly four decades fighting and advocating against the two illnesses, here’s what Lewis-Thornton, now 59, believes Black people need to know: 

1. HIV may cause symptoms, but not always. 

Lewis-Thorton, who was born in Buffalo, N.Y. and raised in Chicago, considered it “good fortune” that she’d found out she was infected when she did. It was 1987 and she was hosting a blood drive. After donating blood, she received in the mail what she thought would be a thank you letter. Instead it was a notice of her status. 

She had no symptoms of HIV before testing positive. 

“We anticipate that somehow we’ll know we’re infected because we hear about the symptoms,” she says.

The Center for Disease Control and Prevention (CDC) states that not everyone who’s been infected will have symptoms, but for the two-thirds of people who do, they may feel flu-like within two to four weeks after infection. 

2. When left untreated, HIV eats away at the immune system, causing AIDS.

When a person is infected and doesn’t begin treatment, the illness progresses through three stages, which ends in AIDS, according to the CDC. 

“People don’t realize that if you become HIV infected, it takes HIV 10 years to destroy your immune system and create [AIDS],” Lewis-Thorton says.

The first stage is acute HIV infection, where an infected person has a large amount of HIV in their blood and is contagious. In the second stage, chronic HIV infection, the virus is still active but at low levels. During this stage, which may last 10-15 years, HIV is transmittable. People who are infected and begin treatment, the CDC stated, have a chance of avoiding progression to stage three, AIDS. 

AIDS is the most severe stage in HIV. People who are infected but haven’t committed to treatment typically survive three years, according to the CDC. 

After several years of treatment at the National Institutes of Health (NIH), Lewis-Thorton began to transition to AIDS around 1993. However, with continued treatment, she’s outlived the life expectancy of a person living with AIDS.

3. Delayed testing remains an issue in the Black community 

In 2019, Black people made up 15,305 or 42% of the 36,801 new HIV diagnoses in the United States, the CDC reported

“The problem still remains, especially for the African American community, most Black folks are diagnosed when their immune system has already started to fail them,” Lewis-Thorton says.

According to 2016 statistics from the CDC, 15% of people who didn’t know they were infected with HIV accounted for 38% of new transmissions. Also, 80% of infections are transmitted from people who are not in HIV care. 

“This is why it’s important for Black people to get tested, to get in care, and stay in care,” Lewis-Thorton explains. “If we get tested and know our HIV status, we will reduce the number of newly infected people.”

The CDC report also detailed how various social and economic issues impacting Black people  — including racism, HIV stigma, homophobia, and poverty — can impact a person getting tested and receiving care. 

Lewis-Thornton agrees that the Black community is “at risk” due to those factors, including trauma. In her upcoming memoir, “Unprotected,” she details how her early childhood years of verbal, emotional, sexual, and mental abuse spiraled into her HIV diagnosis. 

“It reads like a novel. You’ll meet all the key players in my life,” she says about the book, which is due to be released in Spring 2022. “You’ll see me crafting alternative worlds for myself as a child. You’ll see me never quitting as a young adult because by the time I’m a young adult, the self-abuse starts…And then by the time I really feel like I’m at the place where I’ve finally gotten my life on track, I’m diagnosed with HIV.”