When Phyllis Malone was first diagnosed with HIV in 1996, she was ashamed.
Incarcerated at the height of the epidemic, Malone was sure she would die. She’d put on her nightgown, lie down in her cell, and cross her arms, as if “lying in a casket.” She thought she wouldn’t wake up the next day.
The stigma associated with the virus kept Malone, a mother of four, from getting help from doctors or support groups.
It wasn’t until four years later after her release when a transitional housing worker told her to look in the mirror, talk to herself and face her fear. She sat in silence for hours, unable to look at her reflection. Finally, she took a deep breath and told herself she can face her illness and own her story – no matter the stigma.
“I’m good enough. Nobody can tear me down,” she said to herself.
Now, Malone, 65, is an HIV prevention specialist. She runs HIV support groups and education efforts around destigmatizing the illness and preventing the virus at SisterLove, an Atlanta-based sexual and reproductive health nonprofit for women.
SisterLove is among several organizations that have received grants toward HIV prevention and outreach from pharmaceuticals company ViiV Heathcare. The company recently launched an $8 million grant toward community outreach, education and prevention focused on Black women.
Though men remain the largest group of people diagnosed with HIV, Black women make up the majority of new HIV cases among women. Seven thousand women diagnosed with the virus in 2018, and Black women made up more than 4,000 cases, according to the Centers for Disease Control and Prevention, which reports transgender women in a separate category.
Despite the staggering rates, experts say, there is less awareness of Black women’s burden of the virus, which is associated with men who have sex with men. One in 9 women are unaware they have the virus, the CDC reports.
“This is about really reframing a narrative … that HIV is only certain people and only in certain places,” said Marc Meachem, external affairs director at ViiV Healthcare, who has spent his career leading medication outreach in disproportionately affected communities. “So many Black women who do get an HIV diagnosis are shocked to find out.”
HIV PREVENTION: Groups struggle to get insurance coverage for expensive prevention drugs, lab tests
Numerous barriers contribute to the disparities in diagnosis and treatment, including structural racism, stigma, discrimination, homophobia and health care access. Those assigned female at birth, Black people, and teens and young adults have the lowest percentage of HIV medical care, according to the CDC.
Taking daily HIV prevention pills – pre-exposure prophylaxis, or PrEP – has been shown to be highly effective in preventing infection.
But only one PrEP pill, Truvada, and the injectable, Apretude (which is manufactured by Viiv), have been approved by the FDA for use by women. Another pill, Descovy, was approved in 2019 but was tested on and approved only for men.
RELATED: FDA approves first injectable drug to prevent HIV
Epidemiologist Maria Nicole Pyra, an assistant professor at Northwestern University, said researchers missed an opportunity to reach at-risk women because it wasn’t determined until later that PrEP therapy is safe for pregnant and breastfeeding women.
“Information about safety during pregnancy was gathered later on in the process. We do a disservice to women, and we saw this in COVID as well, when we don’t find ways to safely include pregnant people because we don’t have the information to counsel them,” said Pyra, who teaches at the university’s Institute for Sexual and Gender Minority Health and Wellbeing and Feinberg School of Medicine.
DISPARITIES: Black, Hispanic people disproportionately suffer monkeypox but fewer are getting the vaccine, early data shows
She added that women often don’t see themselves represented in PrEP marketing. Companies usually focus on men, who made up about 80% of the more than 37,000 new HIV diagnoses in the U.S. in 2018, the data set year used for comparisons by the CDC. About 69% were among men who have sex with men.
Additionally, PrEP medications aren’t reaching enough patients – especially those of color, according to a CDC analysis. Of about 500,000 Black and 300,000 Latino patients who could have benefited from PrEP in 2015, only about 7,000 prescriptions were filled for Black patients and 7,600 for Latino patients.
In comparison, about 300,000 white patients could have benefited from the medication, and more than 40,000 prescriptions were filled.
The medication was approved for use in 2012, but “the majority of these 10 years have really been focused on getting messages to gay men, and therefore PrEP became a biomedical HIV prevention, an intervention, that was not necessarily geared toward the lives of Black women,” said Kamila Alexander, an associate professor at Johns Hopkins University School of Nursing who studies HIV disparities.
“That opportunity was completely missed,” she said. “If you don’t feel like it’s for you, then you’re not going to pay any attention to it.”
Transgender women also face disparities. A CDC survey showed 4 of 10 transgender women had HIV and the majority of those were Black, followed by Hispanic or Latina women.
Tori Cooper, a health equity advocate at the Black Women’s Working Group, which helped develop the framework for the grant, said it is essential to reach diverse Black women who didn’t realize they had to be aware of HIV. Cooper directs transgender justice at the Human Rights Campaign and was the first transgender women appointed to the Presidential HIV/AIDS Advisory Council.
“It’s really using a peer-to-peer model where Black women are talking to Black women,” she said. “This is Black women who are leading. We’re creating, we’re educating, providing resources and brain power to other Black women.”
MONKEYPOX UNNERVES AIDS ACTIVISTS: Have lessons been learned?
Sigma interferes with communication about risk in relationships – and that’s contributing to infections and missed opportunities for prevention, experts say.
“We are, by and large, invisible and stigmatized in ways that we don’t even, we can’t, articulate,” said Jasmine Ward, founder of Black Ladies in Public Health, a group also receiving a portion of the grant. “That’s how stigmatizing HIV can be.”
Alexander, who is also an expert in intimate partner violence and relationships, said some women may not expect a partner to expose them to the virus or expect themselves to have it because the majority of cases occur in men who have sex with men.
To open up communication, SisterLove founder Dázon Dixon Diallo said, education efforts should include diverse, destigmatizing sexual identity and fluidity information for patients and their partners.
“We don’t need to demonize. We don’t need to call out. We just simply need to have education, comprehensive sexual health information and services that meet people where they are, where they live and where they identify,” Diallo said.
Specialists have been moving toward a different form of dialogue with patients that focuses on Black women’s goals for their lives, instead of a risk-based conversation that may stir fear.
“We talk more about people’s aspirations and their desires for their best sexual health, well-being and pleasure,” Diallo said. “They just don’t have to talk about what’s wrong with their sex lives. They can talk about what they want, what they hope for, what their story is.”
In her support groups and peer advising sessions, Malone encourages her clients to bring their partners and advocate for themselves within relationships.
“Say, ‘I want us to be safe. I want you to be on PrEP.’ Can we say that to our man, can we say that to our woman? Be able to say what you want, what you need,” Malone said.
She tries to pass on the strength she found to tell her own story.
“Sometimes people aren’t able to talk, and I always want to be able to say, ‘Don’t worry about what Tom, Dick and Harry have to say,’” she said. “I don’t want anybody being hesitant about it. … We don’t have to have a problem saying, ‘I’m (HIV) positive.’”
“I want that to happen for all HIV–positive Black women: to not feel so ashamed.”
Reach Nada Hassanein at [email protected] or on Twitter @nhassanein_.
MORE: Florida is the epicenter of the nation’s HIV and opioid crises. This doctor is battling to stop the virus and winning.
When Phyllis Malone was first diagnosed with HIV in 1996, she was ashamed.