An estimated 39 million people around the world were living with HIV in 2022, reports UNAIDS.

Getting treatment for HIV can reduce the amount of virus in a person’s blood to undetectable levels, which helps prevent opportunistic infections and other serious complications. When HIV is undetectable, it’s also untransmittable. That means it can’t be passed from one person.

Many people with HIV face barriers to getting a diagnosis and treatment.

People with HIV may also experience other challenges, including stigma and discrimination from friends, family, or other community members. Improving HIV awareness and support services is critically important.

To learn about the importance of social support for people living with HIV, Healthline spoke with Steve Letsike — the Executive Director of Access Chapter 2, an organization that promotes the human rights of girls, women, and LGBTQI+ community members in South Africa.

Read on to learn what Steve had to say.

This interview has been edited for brevity, length, and clarity.

Managing HIV requires a lifelong commitment to stay healthy.

First, are you able to access treatment and support services? Once you get your diagnosis, the information that’s shared with you is critical to understanding what you’re dealing with and the benefits of getting treatment, adhering to treatment, and seeking health support.

The second thing is to deal with the mental health and psychosocial aspects. HIV stigma has created a lot of fear, and it’s often a fear of the unknown. It’s important for us to relieve people of that fear through improved understanding — to help people understand that HIV is not a death sentence, but it does require people to take good care of themselves and each other.

When people have the support they need to cope with the mental health and psychosocial aspects, they can be free to be themselves and relate with others.

Community care and support is really necessary.

Peer-led support is about people living with HIV speaking [with] other people living with HIV. It’s about living healthier together, as communities. It’s about restoring dignity and integrity.

Peer support programs can provide a safe space for learning and talking about HIV.

Our organization runs a number of programs to encourage treatment adherence and share lessons about taking treatment, managing side effects, and so forth.

We run treatment adherence clubs, we’ve started a one-to-one mentorship program, and we also have telephone counseling for psychosocial support.

It’s important to understand that the needs of people living with HIV are not just about treatment. Support programs need to look through an intersectional lens. We need to respond to people’s socioeconomic needs, address their social vulnerabilities, and make sure their human rights are central and nonnegotiable.

I think we have an obligation to take care of our loved ones. And we can do that by expressing solidarity or allyship.

There’s stigma not just toward people living with HIV but also toward their families. So, are you going to stand up to raise awareness and advocate against that stigma?

Psychosocial support is very important.

Economic and practical support are important, too.

Sometimes a person living with HIV may get sick with opportunistic infections. If they get sick, how are you going to help them? Supporting someone who can’t get up, collecting their medication, making food for them — that kind of practical, day-to-day support is important.

Stigma and discrimination are about whether or not we’re treated equally, whether or not our dignity is restored. And you can’t restore dignity if you don’t hold people accountable. This means reporting discrimination and using systems of equality to hold individuals accountable.

We want people to speak up against stigma and discrimination. And if you can’t speak out and be your own voice, [use] organizations that fight for human rights and justice. Let them be those voices and test those systems of equality.

As an organization, we believe that the burden of raising awareness and responding to stigma and discrimination shouldn’t be left only to individuals with HIV.

We’re staunch believers that those challenges can’t be addressed from one side. Yes, people with HIV need peer navigators and peer support. But we also need to take a multisectoral approach to reduce stigma and discrimination.

We’ve been advocating for an ecosystem approach. At the center is the person with HIV. Then, we also need to think about their families, their relationships, and the individuals they’re connected with. What care and support will we provide for the individual? What care and support will we provide for the families, neighbors, churches, and community leaders?

We have to make sure that we reach out through those networks.

And we have to make sure that people living with HIV are not just receiving services but also leading the response to HIV as changemakers. It’s important to allow individuals from key and vulnerable populations to lead, speak on their own behalf, and be part of solutions.

Steve Letsike is the founder and executive director of Access Chapter 2 (AC2), an organization that works to protect and promote the human rights of LGBTQI+ people, women, and girls in South Africa. She also currently serves as the co-chair of the South African National AIDS Council, the co-chair of the South African Department of Justice’s National Task Team on Hate Crimes and Gender Based Violence, and the co-chair of the Commonwealth Equality Network. At her core, she is a human rights advocate, feminist, and entrepreneur.