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Illustration by Maya Chastain

There’s no doubt that the advancements made in HIV care since the 1980s have been extraordinary.

Antiretroviral therapy (ART) is helping many people with HIV live longer, healthier lives. In fact, the gap in life expectancy between people with and without HIV is decreasing, now down to less than 7 years with early ART initiation, according to results of a cohort study published in JAMA Network Open.

Today more than 25 million people are accessing this lifesaving medication.

In addition, the availability of pre-exposure prophylaxis (PrEP) is helping reduce the number of new HIV cases around the world, and there are even two large ongoing clinical trials for an HIV vaccine, both in the late stages of research.

With all of this progress, and in the middle of another global public health emergency caused by COVID-19, you might think of HIV as an issue that’s no longer urgent or close to home — one that’s happening to other people, somewhere else in the world.

But in reality, that’s simply not the case. In 2019, 1.7 million people newly contracted HIV, according to the World Health Organization (WHO).

Although the greatest number of people with HIV live in Africa (25.7 million), according to WHO 2019 data, there are also:

  • 3.7 million people living with HIV in the Americas
  • 3.7 million people living with HIV in Southeast Asia
  • 2.6 million people living with HIV in Europe

It’s also important to consider other factors about HIV that may surprise you, including:

  • Awareness of HIV status. Around 1 in 5 people living with HIV doesn’t know their status.
  • Misconceptions about HIV prevalence. Some urban areas in the United States have an HIV prevalence that’s similar to rates in low-income countries with general HIV epidemics. But it’s rural U.S. regions that now have the faster rates of rising HIV prevalence.
  • COVID-19. The COVID-19 pandemic is increasing the burden on HIV services around the world, with interrupted access to ART being a concern in some countries. According to the WHO and UNAIDS, the effect of COVID-19 could cause AIDS-related deaths to double in the coming year.
  • At-risk communities and key populations. Although they’re a small part of the world’s population, these communities are often most affected by HIV. Due to stigma and discrimination, they’re also the least likely to have access to healthcare services. In 2019, these populations, which include gay men and transgender people, accounted for more than 60 percent of all new HIV infections worldwide.

There’s still a lot of work that needs to be done to end the global AIDS pandemic. Good ways to stay involved in the effort to end HIV around the world include:

  • getting educated
  • advocating against stigma
  • supporting community-based organizations in your area

To highlight the important work being done at the community level, Healthline connected with the leaders of two community-based organizations supporting people with HIV, one in the southern United States and the other the southern African country Eswatini.

Read on to learn more about these charismatic leaders, their organizations, and what life looks like for people living with HIV in their communities.

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Sibusiso Lulu Maziya is the executive director of HealthPlus 4 Men, a nongovernmental organization based in Eswatini. Photography courtesy of (RED)/Jonx Pillemer

Sibusiso Lulu Maziya, known as Lulu by his friends, grew up in a semi-urban neighborhood in Africa where the issues of LGBTQ+ communities and other people with greater chances of contracting HIV were never discussed.

“I grew up feeling that I was different from the other guys,” said Maziya. “And I couldn’t understand what was going on with me because there was no one talking about it.”

“Then something happened. I was reading the newspaper, and there was this guy who was talking about being gay. I didn’t know what to say, but I started making my own research. Then I discovered that was me,” he recalled.

After moving to Mbabane, the capital of Eswatini, Maziya became a passionate advocate for the LGBTQ+ community, talking to the local newspapers, radio shows, and everyone he met about the issues his community faced.

Eventually, he caught the attention of someone at Eswatini’s Ministry of Health. She was so impressed with his commitment to advocacy that she asked him to help with HIV research in the country being led by Johns Hopkins University.

From 2011 to 2012, Maziya helped recruit study participants from key populations, including LGBTQ+ and sex worker communities.

Maziya visited people from key populations at their houses during the study, where he helped to collect data and bring direct care services to them.

After the study, he was inspired to move beyond advocacy work.

“To me, advocacy is important,” Maziya said. “But we needed to be doing something for the people on the ground. So I started HealthPlus 4 Men.”

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HealthPlus 4 Men provides health services, like peer-led support groups, that aim to reduce stigma and discrimination among the most at-risk populations in Eswatini. Photography courtesy of (RED)/Jonx Pillemer

HealthPlus 4 Men

HealthPlus 4 Men is a nongovernmental organization that supports LGBTQ+ communities at risk of contracting HIV by providing them with access to:

  • testing
  • treatment
  • prevention
  • health education
  • care services

Maziya founded HealthPlus 4 Men in 2014. At the time, he was working with LGBTQ+ community members who’d been expelled from their homes and families because of stigma.

Building on the advocacy work Maziya started, HealthPlus 4 Men aims to educate the general public and policymakers on issues facing the LGBTQ+ community in Eswatini.

In 2017, the organization started offering direct health services to key populations, including blood tests, sexually transmitted infections screening, and HIV testing. It also began offering PrEP and post-exposure prophylaxis (PEP) to those who were HIV-negative and ART to those who were already HIV-positive.

“Now, we have a big clinic for key populations in Mbabane, but we also have mobile clinics where we provide all these services, even COVID-19 screenings,” Maziya added.

Maziya’s goal with HealthPlus 4 Men is to reduce stigma and discrimination against at-risk populations and create the country’s first AIDS-free generation.

He’s helped in this effort by organizations like (RED) and the Global Fund, which works with local experts and community organizations to create and support HIV programs in sub-Saharan Africa.

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Monica Johnson is the founder and executive director of HEROES, a nonprofit organization that focuses on educational initiatives and retreats for people living with HIV in the rural South. Photography courtesy of HEROES

Monica Johnson has been living in rural Louisiana for 35 years. She’s been living with HIV for 37 years, which resulted from a blood transfusion she received during a hospital stay. Her original HIV test was inconclusive, so it wasn’t until she got pregnant 4 years later with her son, Vaurice, that she received a positive HIV diagnosis.

Vaurice also developed symptoms of HIV and became one of the first clients to receive care from the only AIDS service organization in Johnson’s rural area of Louisiana. It was there that Johnson started attending her first HIV support group.

Rural communities, especially those in the southern United States, are often underserved with regard to HIV support and care services. In 2018, the South had 52 percent of the country’s new HIV diagnoses, with a growing number of cases among rural communities in particular.

This increase in HIV cases can be linked to a lack of access to support services in rural areas, including:

  • fewer local healthcare providers
  • fewer options for reliable public transportation
  • few or no drug rehabilitation programs

For Johnson, her original support group just wasn’t working: “I would spend an hour [driving] each way for a 30-minute meeting that catered mostly to men.”

Child care, transportation, and other issues that often kept women and children from attending were overlooked.

So, Johnson took matters into her own hands and founded HEROES in 1995. Today Johnson is the executive director of HEROES, managing day-to-day operations in Columbia, Louisiana.

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HEROES offers an annual 3-day retreat, DREAM, where attendees discuss how to overcome barriers to healthcare and self-empowerment. Photography courtesy of HEROES

HEROES

HEROES stands for Helping Everyone Receive Ongoing Effective Support. This support takes the form of educational programs about HIV prevention and treatment and positive social experiences for group members. Johnson welcomed around 40 participants to her first meetings in 1995.

Originally open to only women, HEROES now includes people of all genders and walks of life. They support people across a large, mostly rural geographic area in Northeast Louisiana.

While HEROES doesn’t provide direct health services, Johnson explained how the program helps support health needs: “I make sure all of my clients know all of the rules so they can get every service they’re qualified for. And I’d say the biggest impact is that my people come back, even though they don’t have to.”

HEROES also hosts an annual DREAM retreat. DREAM is a weekend getaway for group members to relax, learn, and enjoy each other’s company.

Johnson is very proud of her successful HEROES buyback program, which helps incentivize members to attend class and stick with services, like the educational program.

At the end of the year, participants are offered the opportunity to buy rewards — mostly practical items like appliances, toasters, and blenders — using only credits they earned through participation.

Sticking to class schedules, filling out surveys, and keeping a consistent journal are just a few ways to earn HEROES credits.

By creating this system, HEROES keeps members engaged and excited about participating in HIV support services.

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A member of HealthPlus 4 Men’s support group in Fairview, Eswatini, demonstrates how to use a condom. Through this program, the local community has become more aware of different sexual orientations and stigma has been reduced. Photography courtesy of (RED)/Jonx Pillemer

One key pillar for both HealthPlus 4 Men in Eswatini and HEROES in Louisiana is respect. Maziya and Johnson both assert that stigma and judgement have no place in the programs they offer.

When Johnson speaks about HEROES University, her organization’s educational program, she makes it clear that any speakers who come to the classes must keep empathy and respect top of mind.

HEROES University allows participants to have important conversations about HIV in a confidential, welcoming setting. Speakers, often doctors or other health professionals, help group members understand their healthcare options using plain, inclusive language.

And at the end of the course, HEROES holds a graduation ceremony, where family and community members are invited to attend and celebrate the accomplishment.

Much of the same is true for HealthPlus 4 Men. Because the government in Eswatini doesn’t have legislation supporting LGBTQ+ rights and doesn’t message directly to the LGBTQ+ community, discrimination greatly affects access to HIV care and education.

According to Maziya, the discrimination LGBTQ+ people face at health centers is severe. Stigma from health professionals plays a big part in why people from these key populations avoid seeking care for HIV and other health issues.

“There has been a huge improvement in terms of service uptake [at HealthPlus 4 Men] because LGBTQ+ and key populations do not want to go to government clinics. This is very true for queer and trans people. They prefer to come to facilities that are specifically designed for key populations, such as ourselves,” said Maziya.

By creating clinics and educational programs that are confidential and free from judgement, HealthPlus 4 Men has increased access to health services among these vulnerable populations.

Both Maziya and Johnson are committed to educating people outside of their respective groups, working to end HIV stigma.

On TV in Africa: “Smash Hate and Embrace Diversity”

Maziya was part of a live TV program, “Smash Hate and Embrace Diversity,” with a group called Amplify Change.

“We were on television for 12 weeks deliberating on LGBTQ+ issues and health services,” recalled Maziya. “People were openly speaking about issues of the LGBTQ people. I was the first one to be a guest on the show, and the response was horrible. People were posting insults about how the show was rubbish or ‘Un-Swazi’ [going against the country’s values]. But we did not lose hope.”

“We continued until people were understanding. When you’re dealing with a change of behavior, it doesn’t change in a night; you need to keep on sensitizing people. This one was huge, and it created a lot of demand for our peer services,” said Maziya.

The show ended very positively and over time opened a lot of eyes in Eswatini. Maziya says viewers are calling the TV station to ask for more of the program. He’s talking with the owner of the TV station about bringing the show back for more episodes.

On TV in the United States: “Deepsouth”

Johnson has been featured in a documentary about HIV, stigma, and poverty in the rural U.S. South. She and her colleague Tamela King discuss HIV-related issues affecting their community in rural Louisiana and the struggles and successes of HEROES.

Johnson met film director Lisa Biagiotti through a mutual friend. At the time, Biagiotti had graduated from Columbia University in New York City and was driving through the southern United States to conduct research for a new documentary.

In 2010, at what was supposed to be the last stop of her trip in New Orleans, Biagiotti was told she had to make one more stop in Columbia, Louisiana. After making the 5-hour drive, she met Johnson and was taken with her commitment and passion for HEROES.

“She wanted to see what we were doing and how we interacted with the clients,” said Johnson, explaining that the filmmaker was impressed with how diverse her group was, calling it its own little microcosm.

Biagiotti later attended the annual HEROES DREAM retreat to better understand what life is like for people who are HIV-positive living in the rural South. Here, she saw Johnson and King uniting their group members with compassion and respect, and so she included them in her film.

Biagiotti’s award-winning documentary, “Deepsouth,” was released in 2012.

COVID-19 has caused health and community systems to become overwhelmed, HIV treatment and prevention programs disrupted, and resources diverted.

Both Maziya’s and Johnson’s groups have felt the effects of the global COVID-19 pandemic. Redirection of health-related funding, loss of jobs, and the need to maintain HIV-related support while keeping a safe distance have become challenges for HEROES and HealthPlus 4 Men alike.

But this hasn’t stopped Maziya or Johnson from finding ways to continue supporting their communities.

“Many organizations have switched their focus to COVID-19 from LGBTQ and key population issues. Many people are losing their jobs in the country,” said Maziya. “[And] the rate of poverty is going up.”

To deal with the added stress that key populations are facing due to the outbreak in Eswatini, HealthPlus 4 Men has hired additional staff to help with the workload. In addition, though movement has been restricted in Eswatini, Maziya stated that HealthPlus 4 Men is making sure its clients can still get to the clinics and services they need.

Johnson has also made changes to HEROES programs. Plans for a virtual 2020 DREAM retreat were set aside because many of her clients didn’t have the right technology at home to make it accessible, despite a lot of interest.

“I want our people to have the best of everything,” said Johnson, who has been delivering care packages with health essentials like masks, hand sanitizer, and cans of disinfectant directly to her clients who would otherwise be attending DREAM this year.

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Attendees of DREAM 2019 enjoy a walk outside in Chatham, Louisiana. DREAM allows participants to talk about HIV in an intimate setting, in addition to lots of fun group activities. Photography courtesy of HEROES

Looking to the future, both Maziya and Johnson say there’s important work yet to be done in the global response to HIV.

According to Maziya, investing in education at the community level is essential.

“It really begins with community,” he said. “If we invest more in community-based organizations, it will benefit all of us because we believe in issues of confidentiality and trust and providing services without stigma and discrimination.”

For Johnson, an emphasis on supporting government leaders in the United States who listen to science is on the top of her list. She also believes that more investment in community-based organizations is needed to support underserved rural communities.

“Most of the time when people come to Louisiana [with HIV research or funding], they go to New Orleans and Baton Rouge, but New Orleans and Baton Rouge have completely different issues than the real rural South,” Johnson said.

HIV is not a problem of the past or one that affects only a single part of the world. Staying informed and supporting the work being done by community organizations can help us remember we’re all in this together.