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Atlanta resident Phyllis Malone, 65, was shocked in 1997 when she was diagnosed with HIV. Working as a nurse’s aide at Grady Hospital, she’d been familiar with AIDS symptoms—including the frequent mouth sores of one patient with AIDS.
She had such mouth sores, too, which is why she decided to test for HIV in the first place—but she still wasn’t prepared for the results.
“I wasn’t just shocked, I was heartbroken,” she tells TheBody.
About two years after her diagnosis, however, she and her two young kids moved into a home for women living with HIV and their children run by SisterLove, an Atlanta reproductive justice organization that provides HIV treatment and care services as well as prevention for Black women. The group also serves women of all backgrounds.
That’s where a journey of activism began for Malone, whom everyone in the SisterLove world calls “Miss Phyllis.” Reluctantly, she agreed to be interviewed for a SisterLove video featuring women living with HIV, which she credits with breaking her out of her stigma-driven silence around her diagnosis.
That led to SisterLove paying her $50 a pop to speak about HIV at different community groups—and ultimately, to the group putting her on payroll as a prevention specialist. She’s still with the group, 25 years later—and exactly 35 years after the group was founded in July 1989.
“SisterLove made me who I am today,” Malone says. “When I came here to work, I knew nothing about testing people for HIV or counseling them—nothing! But they taught me, and now I can talk with the best of them.”
SisterLove also gave her a much-needed sense of community, among other Black women living with and without HIV.
Because she saw the same women every day, “I didn’t have to keep on revealing my HIV status,” she says, which was a relief. “When I think about how far I’ve come under Dázon.” She pauses. “She’s patient, resilient, and can jump into any situation and make it not as bad as you thought it was.”
A Determined Founder
Malone is referring to Dázon Dixon Diallo, a Georgia native and graduate of Spelman, the prestigious Black women’s college, who founded SisterLove in 1989.
Since then, Diallo has grown SisterLove to a $3.5-million agency with 23 full-time staff, two Atlanta sites plus a mobile clinic, a yearly in-person reach of about 3,000 people, and a social-media reach of more than 2 million people. The agency embeds HIV-related services in a broader mission of wellness, reproductive justice, and equity for women of color, with a focus on sexual health.
SisterLove does everything from hosting sexual-health parties in private homes and advocating for health funding and policy on the federal, state, and local level to conducting both independent and collaborative research and making quarterly visits to rural stretches of Georgia, where there are few health centers save for religious anti-abortion groups posing as maternal health hubs.
“We’ll go wherever we’re invited,” Diallo tells TheBody on a two-hour call to discuss SisterLove’s 35 years and counting. “And we’ll offer nonjudgmental respect.”
The agency’s origin story begins a few years before 1989, when Diallo, fresh out of Spelman, was working at the Feminist Women’s Health Center (FWHC) in Atlanta, which performs abortions. (Georgia is among a number of states that, since the Supreme Court overturned Roe v. Wade two years ago, now bans abortion six weeks into pregnancy, a point at which people often don’t know they’re pregnant.) When news of actor Rock Hudson having AIDS rocked the media in 1985, “women started calling in to AID Atlanta”—the city’s main agency at that time—“like crazy,” she recalls. AID Atlanta, being primarily a group of and for white gay men, would refer the women’s calls to the FWHC.
“There was nothing in the AIDS space for Black women,” Diallo says—which led to her volunteering at AID Atlanta, where she started the first safer-sex workshop aimed at women. At a certain point, she says AID Atlanta dropped its women’s services, so she took them over to the FWHC—just as the anti-abortion group Operation Rescue was draining the FWHC’s coffers through legal battles and the need for increased security. AIDS in women “was not on the FWHC’s radar as an important thing, so it was easy for them to cut it from the budget.” Diallo says she thinks FWHC deprioritized AIDS in women because the majority of those women were poor and Black.
Feeling strongly that women’s HIV/AIDS services were still needed, Diallo pulled together an advisory board made up entirely of women of color―except for Sandra Thurman, who would become President Bill Clinton’s AIDS czar―and started presenting the former FWHC prevention workshop out of her own house.
In 1989, Diallo came up with the name SisterLove, which she says came to her in a dream.
It signals, without mentioning the word AIDS, that for Black women living with AIDS, “first of all, they have to know they are loved, because there was already so much hate for people with AIDS, and whatever happens to humankind happens worst to Black women.” AID Atlanta served as SisterLove’s fiscal sponsor until the group became its own nonprofit entity in 1992.
Diallo’s parents were anxious when she told them she was starting her own organization, she recalls. “They asked, ‘What are you going to do for insurance?’ and I said, ‘I’ll figure it out.’”
Thirty-five years later, it appears that she has—if by “figuring it out” she meant not only keeping herself employed but growing an organization to meet the challenges of the ’90s through the 21st century. Once effective HIV treatment emerged, that included helping countless women access HIV medications and care via the Ryan White program. It also included offering HIV-negative women who were at risk for HIV an array of preventive tools and information: how to use a condom, how to talk to their sexual partners about HIV risk, and the option of taking the HIV preventive pill regimen pre-exposure prophylaxis (PrEP) when it became available in the 2010s.
Much of the ’90s, she says, was “all about activism, first working to expand the official definition of AIDS to encompass women’s symptoms and then focusing on treatment access.” SisterLove got involved in the AIDS fight both in the U.S. and in countries like the Philippines and Uganda, presenting its safe-sex workshops, branded “HealthyLove.”
A turning point, she says, was when SisterLove started receiving funding from the Ford Foundation, which had instituted a focus on women’s reproductive justice.
SisterLove also started a transitional housing program―the one that benefited Malone before she got her own place―that ran into the mid-2000s. At that point, says Diallo, the group also became a community-based research organization. In 2007, the agency purchased the Mother House, the original home in Atlanta of the 1983-founded National Black Women’s Health Project, as its own office building.
When SisterLove turned 20 in 2009, it started something Diallo is particularly proud of—the Leading Women’s Society, an ever-growing international cohort (now at 350) of women both living with and working in the fight against HIV.
Each year, the society holds a gala honoring these women. “It’s almost like a support network for women living with HIV” who work in the field, she explains. “It’s a combination of a sorority and a professional group” started because “I wanted to thank women who’ve been fighting HIV in their bodies as well as in their communities.”
Diallo says she started Leading Women’s Society in honor of Juanita Williams, one of the first women living with AIDS who came to SisterLove for help and who ended up becoming a HealthyLove facilitator. Williams died in 2021 from pancreatic cancer.
The Work Right Now—And Looking Ahead
In recent years, and especially since the overturn of Roe, Diallo says the agency has been putting a special focus on reproductive health and pregnancy services. “The only thing holding us back is getting an ultrasound on our mobile unit so we can identify the earliest stages of pregnancy,” she says. “And unless the law changes in Georgia, we can still provide medication abortion.” But she says that the fallout from the overturn of Roe has been “traumatic” in Georgia. “We now have women traveling out of state up to 700 miles” to get a surgical abortion.
But she also sees the focus on reproductive issues as part of SisterLove’s aim to not address HIV in a bubble. “Any organization that is still trying to do that is doomed,” she says. “A big part of our work right now is integrating HIV care into the larger paradigm of women’s primary-care needs. We still have general practitioners saying that they can’t take on HIV, and that’s just not true.”
That integrated approach will be on display when SisterLove opens its first primary-care clinic sometime in the next two years. The project is still in the fundraising stages.
Also, she says, “We’re doing a serious push to bring self-care into its own, making more drugs available over the counter, and promoting more [at-home] self-testing” for various things.
As busy as she is now, Diallo foresees stepping down from SisterLove leadership in about five years. “I envision our future leadership as being not me,” she says. “I don’t want to be here until I’m 65. Younger energy is needed to take us to the new frontier.”
She’d like to go back to school, she says, to better learn how to tell “the stories that I want to write,” including ones about how “it will be Black women who save this planet—and we will save it.”
A Legacy of Empowerment
But in the meantime, she’s plenty busy—and keenly aware of how SisterLove has shaped her life. “I’m deeply grateful that my work is my life’s purpose, and that I’ve known this purpose since I became an adult,” she says. “There’s nothing more fulfilling than having a purposeful life.” She says she feels so embedded in a community of Black women living with HIV that many of them are surprised to learn that she is not living with it herself.
“When I said that once at a conference, there was an audible gasp of surprise in the room.”
Mostly, though, she says she’s proud that “we’ve created spaces for Black women to embrace, love, and honor themselves as sexual beings.”
One of those women is Masonia Traylor, 36, who was diagnosed with HIV in 2010. Traylor tells TheBody that SisterLove has connected her to many opportunities to speak and advocate publicly on behalf of Black women living with or vulnerable to acquiring HIV. “They began a year after I was born, and they’ve paved the way for me as a younger Black woman about not only living with HIV but understanding why reproductive justice is important,” she says. “Dázon encourages you to nurture your own gifts and believe in yourself.”
And, of course, SisterLove has been instrumental for Miss Phyllis.
“If it weren’t for them,” she says, “I’d probably be at home every day just taking a shower, watching TV, and going to bed. Now I have a purpose. I meet people, I talk to them. I can talk you off the ledge, calm you down, and make you feel good.”
