The year was 1995. In a secondary school in Kampala, Uganda, 12-year-old Massy Mutumba and her classmates sang about HIV:   

AIDS will kill, those who don’t care/

AIDS has no mercy, those who don’t heed/

Remember, there is no cure/ 

But suffer and then die/

Unless you change and change today.

It was a simple tune the children sang daily — its intent, to prevent HIV transmission by preaching abstinence.

In the 2000s, U.S. HIV programs in sub-Saharan Africa, shaped by evangelical lobbying, promoted “sexual morality” messaging while sidelining comprehensive sex education. But while the aim was to prevent infection, songs such as the one Mutumba and her classmates sang often deepened stigma for people living with HIV, particularly children.

“The stigma was suffocating,” said Mutumba, MPH, PhD, now an assistant professor at Washington University School of Public Health in St. Louis. “If people even suspected someone had HIV, they whispered about them, avoided sitting near them, and washed their utensils separately. Friends and family often pulled away, and even health workers sometimes refused care because they were afraid of being infected. I remember women in labor left alone in maternity wards, effectively forced to deliver by themselves, simply because they were known or suspected to be HIV-positive.”

Uganda has one of the highest rates of HIV infection in the world. According to the Uganda AIDS Commission, 1.5 million people in the country were living with HIV in 2024. An estimated 72,000 of them were children 14 and under, nearly all of whom acquired the infection from their mothers.

Growing up in a world saturated by fear of HIV and AIDS, Mutumba instead developed a commitment to help her country fight the HIV epidemic. After completing a bachelor of science degree in nursing at Mbarara University of Science and Technology in Uganda, she became involved in clinical trials focused on children and adolescents with HIV. Her role was to ensure that participants took their medications as prescribed in the protocol, but she discovered that participants needed support in countless ways not directly related to medical care. To help keep a study going — a key step toward improving the lives of young people with HIV — she found herself  supporting indigent participants with food, transportation and clothing; bailing participants out of jail; becoming a legal guardian when participants’ family members or others deserted them; and chasing down pregnant teens who had abandoned their care, and then persuading them to return.

“That experience was eye-opening for me,” Mutumba said. “Here we were thinking we need to get children on treatment because mortality was high, but then you realize it’s not a silver bullet. Yes, the treatment is needed, but children and adolescents come with a host of other factors — food insecurity, unstable living conditions, and underlying all of this is poverty and mental health. You could really begin to see what it means for a child or adolescent to walk through their circumstances in the context of HIV.”

Today Mutumba helps children and adolescents living with HIV by working to destigmatize HIV within schools in Uganda. In her studies, she asks: “What things are you doing in school that reinforce the stigma for adolescents within your setting? And what can we do better?”

One group of interventions involves helping educators navigate conversations around an adolescent’s HIV status. Most people who contract HIV as children aren’t told their status until they reach their teens. While school officials don’t decide when and how to tell an adolescent that they are infected, they must be prepared to support their students — before and after they find out their status — and minimize stigmatization within the school community. 

Mutumba also has taught adolescents with HIV about the infection, to strengthen their knowledge and skills to engage in HIV care. Her work also has focused on sexual violence, one of the most common sources of exposure to HIV, especially for young girls and women.

In Uganda, young girls and women (ages 15 to 24) are five to six times more likely to be infected with HIV compared to males in their age group, due to sexual violence. Mutumba focuses on building community coalitions to increase awareness and prevention of sexual violence, and develops programs to encourage sexual violence survivors to use health services, which fewer than 10% of this group do.

The work of Mutumba, and of many others working to improve the lives of Ugandans with HIV, is having an impact. The country has seen a 76% decline in mother-to-child transmission, and a 61% decline in new infections since 2000.

Here, Mutumba talks about what it is like for children and adolescents to live with HIV; the importance of mental health; and the joy she still manages to experience in a tough field.

Q: What is the main focus of your work?

“My research has evolved alongside the children I work with. As they grow older and their needs change, my work has shifted from a primary focus on HIV treatment adherence to a broader emphasis on mental health, substance use, and sexual violence. That transition began when I became deeply involved in the process of disclosing HIV status to children and witnessed firsthand the profound psychological impact of disclosure on their lives.

“Once children hit adolescence, we have to go through the process of disclosing their HIV status to them. And the impact is immediate. Where you didn’t have mental health challenges before, suddenly this becomes a key factor in the clinics — mental health distress, especially in the immediate period following disclosure.”

Q: Can you tell us about how and when children learn they have HIV, and how their guardians handle that?

“There’s a difference between what the guidelines say and the practical realities. This is where pediatrics becomes very fascinating. The World Health Organization (WHO) says you should start the process of disclosure as early as 6 years old. Of course, you must take into consideration the child’s cognitive capabilities and introduce information in a way they can understand.

“That (the WHO recommendation) is not the reality, because of the high levels of stigma.… So many parents want to delay that initial disclosure until after the children have finished primary education and taken that primary leaving exam, because they’re worried about how disclosure could affect their child’s performance. They’ve probably seen what’s already happening to their neighbor who disclosed to their child about HIV.

“Many parents lie to their children. The intent is to protect their child. Rather than telling them they have HIV, they’ll say they have a disease that’s a bit more socially acceptable, like sickle cell or asthma, or something else that requires them to take medications, but they don’t tell them about the HIV. All of this is to avoid the stigma.”

Q: What research projects are you working on now toward helping reduce stigma?

“The idea is training educators, and when we think about educators, it’s not just the administrators or the teachers, but also — because most of our adolescents go to boarding schools — we work with support personnel who oversee the day-to-day lives of adolescents: teachers and matrons or patrons, because the students live in dormitories. We’re working with the cooking staff, because they can have really stigmatizing attitudes and make comments that could hurt the child.

“We’re working with adolescents as individuals themselves, helping them think about how you negotiate these social environments within schools. And it’s simple things like: ‘If you’re keeping your medications on you, how do you plan your day?’ We need to really walk them through the planning process, because executive functioning skills are still developing. We help them plan: What is the ideal time to take the medications? How do you time medications with mealtimes? We teach them skills like stuffing cotton into their pill bottles, so they don’t shake and make noise and their friends don’t ask, ‘What are those things jingling in your pockets?’

“We work with caregivers, too. The idea is: How do you build supportive communication, but also help parents realize what stigma looks like, whether intended or not, within a family setting?”

Q: Will you share a story that has moved you in your work?

“I remember this one girl. She would be brought to the clinic by a social worker — so she clearly lived in a group home, didn’t have any parents — but she had a very caring social worker. You’d barely get a word out of this girl. She was just quiet, never really engaged.

“And then one day I told her, ‘You really need to come to the clinic on Saturday. There will be a band.’ The first time I saw this girl smiling was as she watched the band perform — she was dancing in the audience, and the next weekend, she was on stage with the band. I told the band leader, ‘She has to join the band. She must join.’

“Well, she joined the band, and she was transformed. She was lively, engaged. I remember she came for her visit two months later, and she was jolly and happy, and she was taking her medication. But later, she came back into the clinic, and she had cancer. And, eventually, she died.

“We struggle so much in this work. So much. It was so disappointing for me because there is so much effort you’re putting in, and it’s so cruel. But even so, there are so many moments of joy.”

Writer

Hayley Abshear is the School of Public Health’s digital content strategist and social media coordinator. She holds a bachelor’s degree in journalism from Webster University and was previously a freelance writer for national publications and a content creator at a PR firm. She brings almost a decade of experience in writing, content strategy and social media marketing to the team.