Two women living with HIV in the Midwest are trying to change narratives around the epidemic | KCUR

LaTrischa Miles has lived with HIV for almost three decades. For years, it meant she had to take up to 16 pills a day. Her HIV regimen used to complicate the care she got for other conditions, including diabetes.

Now it’s under control, she said. Thanks to medical advancements, “I take one pill a day for HIV.”

But Miles, a treatment adherence manager at KC CARE Health Center in Kansas City, Missouri, admits her daily routine is not a “one size fits all” for others living with HIV, the virus that causes AIDS.

“I take my medication in the morning and I’m done,” Miles said. “Everybody is not used to taking medications.”

The healthy balance Miles has established while living with HIV now gives her the chance to use her life and work as examples to help others affected by the HIV epidemic. And she’s not alone.

“Black women are disproportionately impacted,” she said. “More than white or any other race — and that’s for a number of reasons.”

According to the Centers for Disease Control, Black Americans account for around 40% of new HIV diagnoses in the U.S.

And, according to more CDC data on HIV, around 54% of new diagnoses in the U.S. are Black women and girls – making them 17 times more likely to acquire HIV than their white counterparts.

Rate of Black females living with an HIV diagnosis: 

• Iowa: 27.1 times that of white females
• Kansas: 16.5 times that of white females
• Missouri: 12.8 times that of white females
• Nebraska: 16.5 times that of white females

Source: AIDSvu (2021)

Miles attributes the disproportionate infection rates to two main factors: A lack of education about how HIV is contracted and transmitted, and the lingering stigma associated with the virus in the Black community.

“People are in hiding or they’re isolated, and that just keeps stigma going,” said Miles, who is also the board co-chair for the Positive Women’s Network, dedicated to improving the lives of women and girls living with HIV.

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“You can’t end stigma or combat it if you don’t talk about it.”

Miles’ personal and professional experience suggests a major issue in the Black community is the shame women and girls face when discussing HIV, despite the many advancements in treatment since the 1980s. And when women don’t disclose their status out of fear of isolation or being ostracized, she said, the myth that women are not impacted by the HIV epidemic is unintentionally perpetuated.

“I think people still see it more as a moral issue, as opposed to a human issue,” she said. “I think sometimes people want to blame or point the finger: ‘What did he or she do to deserve HIV?’ When in fact no one deserves HIV, just like no one deserves cancer or diabetes.”

Disbelief at diagnosis

Mary Keyes, a longtime HIV activist in Kansas City who is affectionately known in the community by her nickname, “Ms. Anjie,” found out she had HIV 29 years ago, during a visit to her doctor’s office.

“She noticed that I had swollen lymph nodes,” Keyes said. “She asked me if I had ever been tested for HIV.”

After getting tested for “everything across the board,” she said, what she learned left her in disbelief.

“When I got there she told me that my test had come back HIV positive,” Keyes said. While the doctor was crying, “I (was) accusing her of having the wrong test.”

Keyes said her reaction came out of a widespread misperception in the Black community about the virus.

“HIV didn’t have anything to do with a Black female,” Keyes said she believed at the time. “It had everything to do with ‘gay’ (and) ‘white’ (men). So I said to her that it was incorrect.”

In fact, data from the Centers for Disease Control and Prevention suggest more than 90% of new diagnoses for Black women result from having sex with men, the highest percentage among all demographics.

Keyes said she contracted HIV after being sexually assaulted, and it took her years of struggle to fully accept her status. It’s a primary reason she found herself in and out of treatment.

But things changed for Keyes.

“When I made a commitment to stay educated about something that I now had to live with a hundred percent,” she said. “I was able to close the door on the fact that I knew how I got it.”

Keyes also dealt with discrimination in the workplace once people knew of her HIV status.

She said it was other women who came before her who inspired her to stand up and speak her truth.

“I wouldn’t be where I’m at right now if another woman that looked like me didn’t stand up and teach me how to be OK and recognize that HIV doesn’t define me. And because I have that in my spirit, I’m able to move to help my community to get better,” Keyes said.

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Facing barriers

Disparities in health care access are a major issue for Black communities across the country, according to reports from the Pew Research Center. A study conducted by the CDC suggests, when HIV is added to the equation, Black women and girls face systemic barriers to getting health care.

Keyes said facing those barriers. has been one of the hardest aspects of living with HIV.

“I had issues with getting medications,” she said. “It kept me from being able to do what I needed to do.

Lack of access to health care can often also limit access to antiretroviral therapy, known as ART, the combination of lifesaving medications used to treat HIV.

In Kansas City, Missouri — where both Miles and Keyes live — less than 63% percent of women living with HIV have visited a health care provider and received a viral load test within one month of being diagnosed with HIV, according to data compiled by AIDSvu, an online interactive mapping tool that details the impacts of the HIV epidemic across the U.S.

It’s the same story for new medications like preexposure prophylaxis, commonly known as PrEP, which is highly effective at combating HIV infection. CDC data says less than 9% of Black people who are eligible for PrEP have been prescribed the drug, far less than white people and Latinos.

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U.S. Department of Health & Human Services

Miles said, for many Black people, historical distrust in the health care system plays a major role in preventing people from seeking treatment, as has the way the drug has been marketed.

“We have been, in the past, taken advantage of, so we tend not to trust it,” she said. “And I think it’s some discriminatory practices that have come into play in the way that it’s been advertised to our community.”

“I think the word still needs to get out to the Black community that this is a preventative measure — the medication that they’re taking won’t give them HIV,” Miles said.

To address that distrust and disparities in HIV health care, the Biden administration launched the National HIV/AIDS Strategy in 2022.

Kaye Hayes, director of HIV/AIDS Policy for the Department of Health and Human Services, said since Black women and girls are affected more than other racial groups, reaching them is a top goal for the Biden initiative.

To that end, Hayes’ department helped develop the I am a work of ART campaign, which helps people living with HIV to stay actively engaged with health care.

“That’s a challenge, you want people to get tested and know their status,” Hayes said. “Then, to help us in this fight to end HIV, we’re talking about HIV prevention.”