From Stigma to Strength: HIV/AIDS Stories of Care, Community, and Change

Each December, World AIDS Day asks the world to pause and pay attention. Nearly 40 million people are living with HIV today, and millions more have died since the start of the epidemic. By just skimming the headlines, one might miss how much the story has changed — and how much work remains.
This blog pulls together voices from very different corners of the HIV community: prevention and harm reduction, youth programs, global children’s health, artisan cooperatives, and LGBTQ‑centered clinics — to show HIV as real people’s lives, not just case counts.

Around 39 million people were living with HIV in 2022, and roughly 1.3 million more acquired HIV that same year. Thanks to modern treatments and advancements in science, many people on antiretroviral therapy can lower the virus in their blood to “undetectable” levels — also known as U=U (i.e., Undetectable = Untransmittable) — which means they cannot sexually pass HIV to a partner.
These numbers fail to reflect how uneven the landscape remains. In many places, treatment remains difficult to access. For some communities, stigma and fear keep people away from getting tested. For others, basic needs such as food, stable housing, mental health support, and steady income still shape who can receive and/or stay in care and who quietly falls through the cracks. The leaders we spoke with and highlighted below are working in their own corners of the world to close the gap between what science says is possible and what people are actually living with day-to-day. We highlight their personal journeys and the fantastic work they and their organizations are doing in the HIV/AIDS space.
Our conversations also delved into broader questions about the nonprofit sector, including how these leaders think about fundraising, burnout, collaboration, and what “good” leadership looks like when the stakes are high. Through these conversations, we gained insight into their leadership styles. We hope that this blog:

Until There’s A Cure was created in 1993 by two California mothers, Kathleen Scutchfield and Dana Cappiello, who were worried about how HIV/AIDS would affect their children and their generation. For Nora Hanna, HIV/AIDS stopped being distant news in 1994, when she lost two friends within months of each other. That loss eventually led her to Until There’s A Cure, where she has been Executive Director since 2008. The foundation wanted a simple, visible way to keep AIDS in the public eye and raise money for prevention, care, and vaccine research, which led to the idea of The Bracelet — modeled after POW/MIA bracelets from the Vietnam era. Most of their merchandise is now made by women and artisans who are living with HIV or have been rescued from sex trafficking in places like South Africa, Zambia, and India. The model is straightforward and intentional:

• They buy the bracelets directly from artisans, putting income in the hands of people who often have few other options
• They then reinvest the sales proceeds into HIV/AIDS research

Based in Santa Barbara, Pacific Pride Foundation (PPF) has been part of the local landscape for decades, since its founding in the late 1970s. Currently, under the leadership of author and Executive Director Julio C.Roman, PPF is the largest LGBTQ organization between San Francisco and Los Angeles.

• They run syringe services programs that exchange used needles for clean ones while offering harm reduction counseling, overdose prevention training with Narcan distribution, and referrals to treatment.
• They provide counseling at the PRIDE Center for the LGBTQ+ individuals, people living with HIV/AIDS, and their loved ones and families — covering everything from relationship challenges and anxiety to newly diagnosed HIV support, gender identity issues, and substance recovery. Services are affordable on a sliding scale (in English and Spanish), with intake appointments free.
• They also provide HIV prevention, substance use support, mental health care, and community education, all run together, creating a safety net for Santa Barbara's LGBTQ+ community and beyond.

Marie Niles spent 30 years in surgery. She knew the textbook risk factors for HIV. She did not see herself in them. Then, at 49, she was diagnosed with HIV. The shock was real, and she had many questions: Who else is out there living with unexamined risk? Who is not getting tested because HIV “doesn’t look like them”?
In Phoenix, Marie created the BeeHIV+ Foundation to reach those people:

• Middle and upper-income folks who assume HIV is only a concern for other communities.
• Women and teenagers who do not see themselves in standard awareness campaigns.

Radiant Health Centers, in Orange County, California, began as the AIDS Services Foundation of Orange County. Over time, it grew into a Federally Qualified Health Center serving the entire Orange County community and specializing in LGBTQ primary care, HIV services, and more.
According to Edwin Rivera-Cortez, Chief Developemnt and Communications Officer, Radiant’s work reflects a simple truth: HIV rarely shows up alone. People also face food insecurity, housing instability, depression, anxiety, and job loss at higher rates than the general population.

Radiant’s response includes:

• A clinic that cared for over 4,500 people in the past year.
• Food assistance ovef 150 people each month.
• Mental health support is available for all of its patients.
• A push to secure of permanent housing for their patients, on the principle that housing itself is healthcare.

The American Foundation for Children with AIDS (AFCA) works in five African countries with children who are infected with or affected by AIDS. For Executive Director Tanya Weaver, the work began with an unexpected call while she was pregnant and living in Afghanistan: would she be willing to help start something for children with AIDS in Africa? Of course, she said yes, that’s just the kind of person she is - always giving, kind, and helping anyone and everyone she can.
AFCA’s work looks different depending on where you stand:

• In parts of Kenya, better roads and infrastructure enable intensive training for local partners and the development of long‑term, income‑generating projects. Five of those projects, linked to an orphanage, are now fully self‑sufficient thanks to initiatives such as water catchment and sustainable farming.
• In remote areas of Congo, the reality is different. Travel is slow, communication can be unreliable, and building skills takes longer. There, “success” looks more like a patient, ongoing partnership than a quick replication of the Kenyan model.

While many people might never interact directly with HealthHIV, they may encounter a clinician or other healthcare worker trained through one of its programs. As Director of Communications and Marketing for HealthHIV, Marco Winkler oversees communications activities for HealthHIV programs, including education and training for healthcare professionals and capacity‑building efforts nationwide. Under Executive Director Brian Hujich, the organization has grown from a small team to nearly 40 staff, with significant projects that include:

• Certified medical education programs in HIV prevention and care.
• Building the capacity of organizations and health professionals serving racial/ethnic minority communities and other vulnerable populations.
• The National HIV E-Learning Training Center and Partnering and Communicating Together (PACT), both funded through grants from the CDC.
• Joint accreditation to provide continuing education for the healthcare team.

Next Step works with teens and young adults who are living with serious illnesses — HIV, cancer, sickle cell disease, and others — at a stage of life when they are supposed to be figuring out school, work, dating, and independence.
Founder and Executive Director Bill Kubicek saw early on that many young people “aged out” of pediatric programs and then fell into a gap. Suddenly, they were expected to manage complex care independently, often without peers who understood what they were going through. Next Step tries to fill that gap with:

• “Campferences” that mix camp‑style fun with workshops and support sessions.
• Song Studio, where young people work with music therapists to write and record original songs about their lives.
• Mentorship programs, including a partnership with Duke University, that pair youth with trained peers and professionals.

When Tyler Berl finished school, he imagined a career in communications, not HIV advocacy. But a role at the Delaware HIV Consortium pulled him into a world he barely knew, and he quickly found himself drawn to the complexity and urgency of the work. Five and a half years later, he is the Executive Director, leading an organization that sits at the intersection of HIV care, housing, and social justice in a small but diverse state.
Tyler talks honestly about “stumbling” into the field, then realizing how much it aligned with his values. What keeps him in it is simple: helping people who are too often pushed to the margins, and untangling the web of social determinants — poverty, racism, stigma, unstable housing — that can make staying in HIV care feel impossible.
The Delaware HIV Consortium focuses on clearing the roadblocks that stand between people and consistent, dignified care. Their work includes:

• “HIV testing, diagnostics, and support getting on and staying on pre‑exposure prophylaxis (PrEP) for people at risk.
• Case management and advocacy for about 10% of people living with HIV in Delaware, helping them navigate appointments, insurance, and healthcare systems that can feel overwhelming.
• Housing assistance for around 125 families, recognizing that it is hard to worry about viral load when you are not sure where you will sleep.
• Emergency financial aid, food support, and help with prescriptions, grounded in a simple belief Tyler repeats often: food is healthcare, and so is a safe place to live.

• Stigma still does real damage. Research links HIV‑related stigma to delayed testing, lower adherence to treatment, and higher rates of depression and anxiety. You can hear that in stories about family rejection, fear of being seen at an HIV clinic, or simply not seeing yourself in the public narrative.
• Science has moved faster than public perception. With modern treatment and prevention tools like PrEP, many new infections could be avoided, and people living with HIV can and do live long, healthy lives. But awareness, access, and trust are uneven. The result is a patchwork of progress.
• Mental health, housing, and food are not “extras.” Data from the U.S. and globally show that people living with HIV are more likely to face mental health challenges, unstable housing, and food insecurity. Organizations like Radium, PPF, AFCA, and Next Step are building those realities into their designs rather than treating them as side issues.
• Impact is felt, not just counted. Funders may ask for numbers first, and those numbers matter. But in these conversations, people kept circling back to small but specific wins: a teacher who changes how she talks about HIV, a bracelet that funds a semester of school, a youth who sings about their diagnosis instead of hiding it, a family that keeps its home.
• Collaboration is slowly edging out competition. Whether it is HealthHIV syncing schedules with AIDS United, AFCA working hand‑in‑hand with local partners, or small groups like BeeHIV+ seeking to complement larger systems, there is a quiet collaborative shift toward sharing credit, platforms, and data.
• HIV/AIDS is not the same emergency it was in the 1980s, but it is also not “over.” Each test taken, each counseling session finished, each bracelet sold, each song recorded, each young person who decides to stay in care is a small move from stigma toward strength. And put together, those moves are how change actually happens.

These stories aren't just about HIV. They're about what it takes to lead through complexity, measure what really matters, and turn individual resilience into community strength. If they spark even one new connection, one new volunteer, or one new donor, that's a win worth celebrating. Platforms like Charity Footprints can help bring awareness campaigns to life if that's the direction you choose.