Community-based Organizations Supporting HIV Self-Testing

As part of their health services for African and Caribbean immigrants and refugees, the African Family Health Organization (AFAHO) provides free HIV screening and related counseling to their clients in the greater Philadelphia area. One HIV-positive client was extremely reluctant to share her status with her partner. AFAHO staff worked with her closely for a few months, eventually convincing her to take two HIV self-tests home for herself and her partner, and to use the test results as a way to break the difficult news. The client later shared with staff that while telling her partner was hard, she also felt immense relief, especially when her partner tested negative. She planned to bring her partner into AFAHO for further HIV information and counseling. “This was a moment of triumph for our staff,” says AFAHO staff member Oni Richards, “We are hoping this process can be replicated if a similar situation arises.”

A large pride flag welcomed community members to all health center locations of Asian Services in Action (ASIA), a health and human services organization for Asian Americans and Pacific Islanders in Akron, Ohio. The prominent flags, emblazoned with the words “Everyone is Welcome Here,” remained up during ASIA’s HIV prevention outreach efforts indicating safe spaces for LGBTQ+ community members to speak with staff about the importance of HIV testing and other health concerns. Thanks to these frank conversations, many previously hesitant community members agreed to be tested at the event or took home free HIV self-testing kits. “From hesitation to confidence, just by creating a welcoming and safe environment,” said Tamoor Rashid, ASIA Community Health Program Manager.

Big Bend CARES (Big Bend Comprehensive AIDS Resources, Education and Support, Inc.) in Tallahassee, Florida took advantage of an anti-bullying rally to successfully promote their HIV Self Testing Program to the young adults attending the event and their parents. One mother inquired about the HIV self-test kits, not for her teenagers, but for herself and her husband. She explained to staff that though she herself sees a doctor for regular health screenings, her spouse does not, claiming “If you are fine, then I must be fine. If you don’t have anything, then I must not have anything.” She thought the non-invasive HIV home tests along with Big Bend’s other health services could help encourage her husband to start taking charge of his own health. She left the rally with two home test kits, and planned to make health screening appointments at Big Bend that they could go to together.

In its fight for health equity, AIDS service organization Caracole proved its outreach goes beyond the greater Cincinnati, OH area it serves.  A high-risk client residing in nearby Northern Kentucky had ordered a home test kit from the Caracole office.  When the client followed up to report his negative test, Caracole staff provided him with information about HIV transmission and prevention through pre-exposure prophylaxis (PrEP).  Living across state lines in Kentucky disqualified the client from Caracole’s HIV Prevention Assistance Program Intervention (PAPI).  But Caracole staff helped the client find the local resources he qualified for so that he could start PrEP to protect himself from HIV. 

The Center for Multicultural Wellness and Prevention (CMWP) uses HIV self-testing kits to further its mission of enhancing health, wellness, and quality of life for diverse populations in Central Florida. The personal story of a CMWP team member shows how the work makes a difference. He had been working on the CMWP’s HIV Self-Testing program for a few months, when his best friend began talking to him about high-risk sexual behavior. He felt concerned for his friend, yet because of his experience working in the HIV Self-Test program, he felt comfortable initiating a conversation about HIV prevention and safe sex. He convinced his friend to take a test. They were both glad to learn that his friend was HIV negative and now has also looked into taking pre-exposure prophylaxis (PrEP) to further protect himself moving forward.

Centro Ararat in Puerto Rico fulfilled 4,816 requests for HIV self-test kits for people all over the island, nearly doubling its initial goal.  “This is one of our greatest achievements!” says Norma Cartagena Colon, Manager of Centro Ararat’s Education Division. As it increased distribution of kits through the mail and at outreach events, Centro Ararat also ran a multi-platform media campaign to further promote its HIV Self-Testing program. Staff participated in numerous radio and TV interviews, and created a website LoPostivoEs, using the slogan “Lo positivo es vivir sin dudas,” (“Living a good life is living without doubt”) to highlight the importance of knowing your HIV status.    

The Coalition of African Communities (AFRICOM) in Philadelphia integrated its HIV Self-Testing kit distribution program throughout its pre-existing community outreach efforts.  Health Coordinator Blessing Bwititi attributed the program’s success to the fact that AFRICOM enlisted trusted community messengers to connect with hard-to-reach people who could benefit from an HIV Self-Test.  AFRICOM also distributed kits to walk-in clients and at clothing drives, food distribution sites, and community meetings.   

The dress code was red undies. The temperature: a mere 11 degrees. The backdrop: snow-lined streets. Encouraging Leaders in Minneapolis celebrated World AIDS day in a uniquely colorful way that raised participants’ heart rate along with HIV/AIDS awareness. At the “Red Undie Run” in December 2022, stalwart runners stripped down to their underwear to run a half-mile course in wind chill that felt like -1 degrees. Along the route, Encouraging Leaders provided information about its HIV Self-Testing program, promoting the value and de-stigmatization of knowing your status. One of the event organizers quipped, “Frostbite and hypothermia are real things!”

Esperanza Health Centers in Chicago lives up to its promise of delivering HIV-related health services and hope to the community.  A Spanish-speaking pregnant woman came to Esperanza seeking counseling and care because her partner is HIV-positive. Although the woman had been taking pre-exposure prophylaxis (PrEP) to protect herself from HIV, she was still living in fear of infection for herself and her baby.  The stigma and fear of HIV/AIDS in her family and community, combined with Spanish language barriers prevented her from getting reliable information about HIV prevention and transmission. Esperanza staff member Marisela Garcia-Martinez counseled the woman in Spanish and gave her HIV Self-Test kits to take home.  The client was visibly relieved to have the facts, the tests, and the support of a bilingual health worker right in her Brighton Park neighborhood.   

Knowing people are more likely to accept help from someone they trust, Florida Harm Reduction Collective (FLHRC) developed an HIV self-testing program with a personal touch. The collective has enlisted peer outreach workers to visit unhoused People Who Use Drugs (PWUD) and distribute the HIV self-test kits in person. The peers, who all have lived experience, go to communal hangouts, trap houses, and parks where the unhoused sleep to distribute the kits. Peers offer to stay with participants for help and support while they take the test, allowing them to then deliver referral information on the spot. They also give away hygiene kits as a way to build rapport, with no strings attached. Since the program started in June 2022, peers have had over 700 interactions with unhoused People Who Use Drugs and have distributed more than 1,000 HIV Self-Testing kits.

As part of its mission to help young people make healthy lifestyle choices, Georgia Campaign for Adolescent Power & Potential (GCAPP) works statewide with schools and youth organizations to provide HIV education and testing. At an outreach event at the annual Crawford County Health Fair, GCAPP distributed free self-test kits and HIV information. One woman attending the fair spoke with GCAPP staff, sharing that her 25-year-old son’s active dating life had her concerned about his HIV status. Despite her efforts, she had not been able to convince him to visit a clinic for testing. She told staff she was grateful for the event and the free self-test kit to take home to him.

Healthcare Access Worldwide, Inc. (HAWI) in Cleveland, Ohio works with immigrants from countries in Africa, focusing on HIV prevention and education about treatment for clients with HIV. HAWI founder Dr. Faith A. Richard tells the story of a 46 year-old self-employed truck driver, originally from Senegal. The man’s sexual partner wanted him to find out his HIV status, but he was only willing to test if he could do it at home. The HAWI-provided self-testing kit allowed him to do just that. The client tested negative, and HAWI gave him condoms and STI educational materials. The Care Coordinator also advised him to take pre-exposure prophylaxis (PrEP) if he changes sexual partners, has multiple sexual partners, or when he does not know his partner’s HIV status. The client was so inspired by his experience with HAWI’s outreach and health services that he now volunteers for their HIV Testing program.

As one of the premier health and wellness organizations for Black gay men in Los Angeles, CA, In the Meantime Men's Group, Inc. (ITMT) draws aspiring actors, dancers, filmmakers and other creatives to its programs and services, including HIV self-testing. ITMT client and filmmaker Nathan J. Lee shared that the self-testing experience was intense. “I had a slight panic attack when I opened the box for the first time. It took a moment for me to take the test but I'm glad that I had the option,” explains Nathan.  He was so inspired by the range of emotions he’d felt that he decided to make a short film about the experience.  His film, titled “Positive,” tells the fictional story of a young woman grappling with the mental hurdles around taking an at-home HIV test. Nathan hopes his film, once finished, can serve as a foundation for education and discussion.   

To commemorate World AIDS Day 2022, Lantern Community Services in New York City distributed HIV self-testing kits at seven of its supportive housing buildings. This work was part of Lantern’s KEP (Knowledge = Power) initiative. At each location, Lantern’s trained resident peers set up tables with an assortment of health and wellness materials, including HIV self-testing kits, safer use kits, condoms and AIDS Awareness Day themed gifts.  Thanks to the effort, Lantern distributed 41 self-testing HIV kits. “It was exciting to engage individuals that you may have seen in passing but never spoke to,” said KEP Resident Peer Brian Carmichael, who added that participating in the event “showed me that I can do this.  We exceeded our expectations!”  

In line with its commitment to making healthcare more accessible across Baltimore City, MD, MedStar Health has successfully taken its HIV self-testing program on the road. The MedStar Health Mobile Health Center provides primary care and other services, including HIV testing, by holding regular hours at several partner community organizations throughout South Baltimore: Drink at the Well, the Transformation Center and Cherry Hill Tenants Association. Recently, a member of the community visited the Mobile Health Center to request an HIV self-test following exposure through an HIV-positive partner. Fortunately, the test result was negative, and the MedStar Health team pointed the patient in the right direction for follow-up care and pre-exposure prophylaxis (PrEP) treatment.  

When the New York Council on Adoptable Children (COAC)  teamed up with Black Girls Smile for its “Safe Space Saturday” in Brooklyn, NY, the organizations doubled their community impact.  COAC’s HIV Self-Test kit distribution effort fit right into the Saturday event, designed to help Black girls and women connect with licensed mental health providers while also enjoying some health and wellness experiences like a relaxing massage. One woman shared with COAC staff Meagan Owens that she once thought of self-care as only massages or manicures, but now understood it also includes sexual health, delighting Ms. Owens who added “I think it’s great when I can broaden people’s ideas about what health looks like.”  

Puerto Rico Community Network for Clinical Services, Research, and Health Advancement (PR CONCRA) has been providing HIV education, prevention and treatment for over 30 years. To promote its HIV Self-Testing Program, the organization’s most effective tool has been community outreach activities.  At one such recent event, a woman engaged PR CONCRA staff member Alejandro Santiago in an emotional conversation, sharing how her best friend had contracted HIV in the 1990s, and had struggled with lack of services and support.  The woman expressed gratitude for PR CONCRA’s work in changing attitudes about HIV and creating greater access to HIV self-testing kits so that “people in 2022 can get tested for HIV anytime, anywhere.”  

When Ariel shows up in Phoenix Arizona, it’s the sign of a good party. Ariel is RipplePHX ‘s HIV self-testing kit storage unit on wheels, well-known for its hard-to-miss presence at area nightclubs and RipplePHX outreach events. RipplePHX staff maneuver the portable, neon-lit unit around designated locations, precipitating conversations around HIV prevention and prompting the distribution of self-testing kits. RipplePHX co-founder Jason Jones explains: “Ariel makes the introduction for us, but the superstars that talk about our mission, about at home HIV Tests and make those connections are our amazing staff, influencers, and volunteers.” Along with Ariel, RipplePHX’s HIV prevention program includes The Chariot, a brightly painted bus that houses a fully-mobile HIV testing facility. 

Thanks to a successful social media campaign supported by female artists, SisterLove, Inc., a women’s HIV/AIDs and Reproductive Justice Organization headquartered in Atlanta, GA has distributed over 700 HIV self-test kits to 19 states nationwide. The campaign directed people to SisterLove’s website for home-test kit requests and promoted community events where SisterLove staff gave away kits along with their SisterLove safer sex kit that includes condoms and STI-prevention information. One female artist who contributed to the social media campaign felt strongly that “by representing diverse individuals in the campaign, it will help to break down stigmas and encourage more people from these communities to get tested and be proactive about their sexual health.” 

The PRIME Specialty Clinic Team of St. John's Community Health offers testing and other support services for HIV and other communicable diseases in Los Angeles, CA. As part of their HIV Prevention Program, the PRIME Team sponsored an outreach event at a local laundromat, where members of the community could do their laundry free of charge as well as pick up free HIV self-testing kits and other STI-prevention supplies like condoms. Participants attending the event expressed gratitude for having access to the testing kits for themselves, but also for their sexual partners and their family members.  

As part of its mission to provide support and equitable access to healthcare to the LGBTQ+ community, The Freelux Project based in Dallas, TX created the web-based LuxTest to ship free HIV self-testing kits by online request.  The Freelux Project staff anticipated a greater response for testing kits from Men who Have Sex with Men (MSM) and Men of Color, so they were surprised when more than half the LuxTest requests came from heterosexual Black women. The Freelux Project founder Nathaniel Holley explains that “there has been an untapped market for online healthcare utilized by Black Women” and that “filling this gap is a success for the program.” Thanks to the LuxTest, The Freelux Project is on target to ship more than 700 HIV self-testing kits all over the country.  

As part of its mission to support Black Gay men living with HIV in Atlanta, THRIVE SS, uses a variety of approaches to successfully promote its HIV Self-Testing program.  For instance, the organization receives and fulfills direct requests for HIV self-testing kits through its website, increasing access and ensuring privacy. And recently, THRIVE SS has been able to increase its kit distribution significantly by advertising on popular dating apps like Jackd and Adam4Adam.  Through new partnerships, THRIVE SS has also started expanding its outreach effort to Latinx communities, as well as connecting with the LS (swinger) community, and Black cisgender women.  

UNIFIED HIV Health and Beyond in Detroit, Michigan has been serving the community for 40 years. The team celebrated its decades-long success on World Aids Day (December 7th, 2022) with the inaugural “Whose Shoulders We Stand On” Gala at the city’s historic St. Andrews Hall. The celebration featured music, food, and awards and showcased UNIFIED’s HIV Self-Test kit distribution effort. Thanks to the efforts of community partners, the planning and execution came together quickly and successfully, inspiring plans for a second annual celebration.  

The University of Arkansas for Medical Sciences (UAMS) successfully expanded its HIV Self-Testing Program by combining a robust print and social media campaign with community outreach events. UAMS’s Department of Family and Preventative Medicine (DFPM)’s HIV Team spearheaded the effort, promoting its online mail-in order system for HIV self-testing kits through printed pocket fliers with QR codes, as well as distributing kits at numerous health fairs.  At one such event, a homeless client who was also a substance abuser was relieved to find out about the free self-testing kits. She was worried she’d been exposed to HIV through a contaminated needle. DFPM faculty member Latunja Sockwell helped the client take a self test, which came out negative. Sockwell then gave her a safe sex kit, and a referral for pre-exposure prophylaxis (PrEP). 

In honor of World AIDS Day in December 2022, the HIV team at Vista Community Clinic (VCC) in San Diego, CA put on a multi-part event at California State University San Marcos to promote its HIV care services to students and all members of the campus community.  At one campus location, the VCC mobile testing unit provided free, in-person rapid HIV testing.  Meanwhile, other team members set up a promotional table to give away HIV self-test kits along with condoms and lube.  At the campus Pride Center, VCC staff invited students to a free “HIV 101” information session.  VCC staff member Ulises Reyes called it one of the group’s “more successful events” because “it relied heavily on teamwork, collaboration with other organizations, and the implementation of multiple resources from all staff.” 

We Think 4 a Change (WT4AC) successfully distributed HIV self-testing kits in Cleveland, OH in part due to its robust calendar of outreach events that furthers awareness and education around HIV. At these numerous events, Peer Navigators engaged directly with the community to give away tests and help reduce the stigma of HIV/AIDS.  In fact, this distribution effort worked so well that WT4AC ran out of testing kits!  Thankfully, the group was able to extend its reach through an additional partnership with the Cuyahoga County Board of Health so it could continue its HIV testing kit distribution program.