Outreach, Engagement, Inclusion Infuse the Work of Georgia’s SisterLove Inc

In 1989, in Atlanta, Georgia, Dázon Dixon Diallo established SisterLove Inc to fill the information and education gap many women, especially Black women, were facing on how the emerging HIV/AIDS epidemic could affect them.

Dázon Dixon Diallo, DHL, MPH, founded SisterLove Inc in 1989, in Atlanta, Georgia, to fill the information and education gap many women were facing on how the newly emerging HIV/AIDS epidemic could affect them, in particular, the women of color whom she served while working at the Feminist Women’s Health Center.

SisterLove Inc is a trailblazing organization in that it was in founded in the South and focuses on helping women, primarily women of color, living with or at risk for HIV.1

“The main reason that we got started was because in 1985, when Rock Hudson2 went public with his AIDS diagnosis, there was very little information at all, if any, about the impact of the burgeoning epidemic on the lives of women. And for some reason, that announcement sparked women's attention or interest,” Diallo said in an interview with The American Journal of Managed Care®(AJMC®). “And the local AIDS service organization that had been predominantly only serving gay and bisexual men up to this time had no clue what to say to these women who were panicking, wanting to know whether this condition or this experience that they were having was actually AIDS.”

Hudson would die in October of 1985, less than 3 months after announcing his diagnosis.2

By 1989, there were a reported 100,000 cases of AIDS in the United States and an estimated 400,000 cases worldwide, according to the World Health Organization,3 and the United States had only reported its first 5 cases in 1981.4

During the ensuing period of 1985 to 1989, several events occurred that highlighted the uphill battle against the HIV/AIDS epidemic, particularly in the South, Diallo explained.

The Democratic National Convention was held in Atlanta in 19885 coinciding with the arrival of anti-abortion protests led by Randall Terry,6 and then-President Ronald Reagan was continuing to emphasize strict adherence to the Helms and Hyde amendments, passed in 1973 and 1976, respectively. Helms limited federal funding to organizations that provided abortions,7 and Hyde prohibited the use of federal funding for abortions and related services.8 At the time, many also viewed Reagan and his administration as not fully acknowledging the seriousness of the new epidemic.9

“There was not going to be any federal funding to do HIV-prevention work at all for us, because we [the Feminist Women’s Health Center] did abortions, and that was the primary source of funding for HIV or AIDS prevention at the time. So financially doing AIDS work was a burden,” Diallo said. “Things were really not looking good for their support of AIDS, because it wasn't relevant to them. But it was relevant to most of the women that we served, who were young and Black and Brown.”

Taking that relevance to heart, Diallo, who is also SisterLove’s president and a member of the AIDS Coalition To Unleash Power (better known as ACT UP),10 gladly accepted the challenge of fighting for the sexual health of women. “That's when I said, ‘Okay, somebody's got to take this on,' and that's what we did.”

In the 32 years since, while maintaining its core focus on HIV and sexually transmitted infections, SisterLove Inc’s services have expanded to include sexual reproductive rights and justice, as well as women’s sexual reproductive health and well-being. Community outreach, engagement, and immersion have infused its nonstop work and its dedicated staff since the beginning.

This concerted effort—principal avenues of outreach include health fairs, local symposia/ conferences, advocacy and activist leadership, and the provision of services, testing, and counseling—to not stigmatize the individuals they serve has led many to praise SisterLove’s nonclinic feel and that it doesn’t probe into its clients lives.

“One of the things that we adopted early on is, 'We are who we serve,'” Diallo said. “We must start with our own communities, and we treat the whole person, not just their HIV concern.”

SisterLove’s Healthy Love Party, which prioritizes Black women and women of African descent, is a big part of this message of inclusion, through its focus on 3 major components: setting an affirming tone through conversation, delivering facts on HIV and sexually transmitted infections through exercises, and promoting safer sex through normalizing conversations about sex, sexuality, and sexual health. This grassroots, interactive effort, which is delivered in 1 session through an on-location house call, meets participants and attendees “on their own turf,”11 intertwines cultural consciousness and community focus with safety promotion and an individual-level focus.

“It’s very sex positive,” Diallo told AJMC®. “And it’s also informing people in a way that it’s comfortable to get that information. The Healthy Love Party was, is, and probably will always be a cornerstone of how we get deep reach into the community.”

Wanting this community-forged and community-based effort to be available on a wider scale to the public health system at large, “as some of the interventions were that were being created by academics, not with community of for or by community, but for research,” Diallo emphasized, not only was the Healthy Love program rigorously evaluated internally, but was done in partnership with the CDC.

From May of 2006 to April of 2008, a 2-phase study was conducted that looked at behavioral interventions through the experiences of 2 cohorts: 161 women received the Healthy Love Workshop intervention (the study group) and 152 women received an HIV/AIDS 101 workshop. Following 3- and 6-month follow-ups, the study group was more likely at both points to report condom use with a primary or any male partner. In addition, those in the study group were more likely to report being tested for HIV and knowing their results at the 6-month mark.12

“We ended up getting an approval status from the CDC and into its compendium of interventions that work because we were using social networks of people who were reinforcing the message,” Diallo stated. “That’s how we get to folks: using social networks in ways that were not typically being used in group-level interventions.”

It’s well known that HIV has had a disproportionate effect in the United States, where as recently at 2019, 20% of states accounted for 65% of new adult and adolescent diagnoses. The South accounted for more than 50% of new diagnoses,13 which was down slightly from 52% in 2015 but highlights new cases are still concentrated in that geographic area.14

In particular, by rate of new diagnoses per 100,000 population for 2019, 9 of the top 10 areas were in the South (8 states plus the District of Columbia), with Nevada being the only state that year from another region (the West), with 19.8 diagnoses. For the states/areas in the South, the District of Columbia had the highest total, at 42.2, followed by Georgia with 27.6; Florida, 23.7; Louisiana, 22.8; Mississippi, 19.2; Texas, 18.2; Maryland, 18.0; South Carolina, 15.6; and Alabama, 15.5.13

Drilling down to the city level, the top 3 large metropolitan areas by HIV diagnosis concentration, for 2019, were also in the South: Miami and Orlando, Florida, and Atlanta.13

This is a fight Diallo and SisterLove Inc took up long ago, first fighting for women of color to be included in social and clinical considerations toward HIV and AIDS—in particular, diagnoses—before expanding their approach to include how the epidemic affected sexual reproductive health and rights, human rights, and research, both in the United States and the continent of Africa.

“Women have been, and still are, just over half of the pandemic in the world,” Diallo emphasized to AJMC®. “Black women, in particular in the United States, mirror the representation and the burden of the HIV epidemic that pan-African women represent to the world. You will not get to the end of the HIV epidemic if you think you’re going to get there without women, without Black women, without women of African descent.”

It has always been about building bridges and sharing what we’ve learned, and what we can learn from, she concluded. “We are fierce innovators.”

References

1. 1980s HIV/AIDS timeline. American Psychological Association. May 2017. Accessed August 12, 2021. https://www.apa.org/pi/aids/youth/eighties-timeline

2. A&E Television Networks. Rock Hudson announces he has AIDS. History. November 13, 2009. Updated July 22, 2021. Accessed August 12, 2021. https://www.history.com/this-day-in-history/rock-hudson-announces-he-has-aids

3. History of HIV and AIDS overview. Avert. Updated October 10, 2019. Accessed August 12, 2021. https://www.avert.org/professionals/history-hiv-aids/overview

4. Gottlieb MS, Schanker HM, Fan PT, Saxon A, Weisman JD, Pozalski I. Pneumocystis pneumonia—Los Angeles. MMWR Morb Motral Wkly Rep. 1981;30(21):250-252.

5. Denery J. 10 things to know about the 1988 Democratic convention in Atlanta. The Atlanta Journal-Constitution. July 15, 2016. Accessed August 12, 2021. https://www.ajc.com/news/state--regional-govt--politics/things-know-about-the-1988-democratic-convention-atlanta/Fwu1gJod8JNtHgIwDnPfJM/

6. Wilkinson F. The gospel according to Randall Terry. Rolling Stone. October 5, 1989. Accessed August 12, 2021. https://www.rollingstone.com/culture/culture-news/the-gospel-according-to-randall-terry-47951/

7. Population Planning and Health Programs, 22 U.S. Code § 2151b. Accessed August 12, 2021. https://www.law.cornell.edu/uscode/text/22/2151b

8. Hyde Amendment Codification Act - S.142 (2013-2014). Accessed August 12, 2021. https://www.congress.gov/bill/113th-congress/senate-bill/142

9. Lopez G. The Reagan administration’s unbelievable response to the HIV/AIDS epidemic. Vox. December 1, 2016. Accessed August 12, 2021. https://www.vox.com/2015/12/1/9828348/ronald-reagan-hiv-aids

10. ACT UP. Accessed August 12, 2021. https://actupny.com/

11. Healthy Love Workshop. SisterLove. Accessed August 16, 2021. https://www.sisterlove.org/women-program-healthy-workshop

12. Evaluation of the Health Love Workshop, an HIV Prevention Intervention for African American Women. NCT00362375. Updated May 14, 2010. Accessed August 16, 2021. https://clinicaltrials.gov/ct2/show/NCT00362375

13. The HIV/AIDS epidemic in the United States: the basics.Kaiser Family Foundation. June 7, 2021. Accessed August 18, 2021. https://www.kff.org/hivaids/fact-sheet/the-hivaids-epidemic-in-the-united-states-the-basics/