Miriam Wana

I had a girl that in January, when the program was ended, she discovered she was [HIV-positive]. She has never been disclosed to [by her parents]. She developed thoughts of hurting herself. She was blaming the parents for infecting her and not telling her that she was taking these drugs because she was infected. She felt worthless, that she can never marry.

We had to talk to this girl. You know, You’re not worthless, you can finish school, don’t kill yourself.

We are making sense in their life. You first create this relationship, like they trust you and they start telling you, they start opening up. I thought I was alone, but you tell them you’re not alone. You’re not worthless, you even can get married, you can produce [children]. So these words make sense in their life and they change.

Miriam Wana is a perpetually upbeat person, who clearly delights in children. She spends much of our conversation gazing adoringly at her one-year-old son, cracking up at his antics. It seemed natural to her that she would support HIV-positive children and young people. As she told the girl she started counseling in January, Wana believes it her mission to make sure that HIV does not limit anyone’s future.

I love working with children, and I just felt like I should be in the HIV sector. The role I was playing was all about children. Supporting children, helping them with their drugs, visiting them, tracking the progress of their viral suppression¹.

After two years with the program, Wana was providing support to 190 children and their families. They ranged from newborns to adolescents on the brink of adulthood.

I was based at a facility. So they would come for HIV testing at a facility. If they test positive, we would enroll them on this program. There were people working in that testing center, so they would refer them to me.

Most of the children that we had were infected through childbirth or the mother’s breastfeeding.

Her program’s services went beyond basic support for managing their infections. Once Wana was assigned to a child, it was also her job to keep on eye on their situation.

When these children come in the facility, they do not open up very fast. And the fact that the health workers at the facility, they have a lot of the clients that they want to see. They give you drugs, then you go back home.

I had to follow up these children in our community. To find out what is happening at home. How is the situation at home?  They have food? Maybe they are not having food. They’re also not maybe schooling. We would assess a lot of things at the house level.

Those homes that were so vulnerable, maybe a child is not suppressing. You find a mother, they are not working. They don’t have any customers or business. Remember, [anti-retroviral treatment], you want someone to take them when they have eaten something. So if they cannot eat, then you cannot maintain yourself on ARVs. That’s when you find them failing, when they are struggling economically.

You would at least visit this child twice in a week, if they’re not suppressing.

Word came January 24 that her program, entirely funded by the U.S. government, was suspended.

They were saying Donald Trump has given us 90 days when we are off. That’s how it started. On January 31, our specialist told us that your contracts are being terminated. He called us to come and pick our termination letters.

I was feeling so, so down. I felt hopeless. We should be instilling hope in them. That having HIV is not the end of life. Now no one is going there to tell them, Take your drugs. You can still go to school, finish school and become whatever you want. All these good words, all these promising words, were being made by the team. We are following up these children at a household level. All of that has been cut off.

Even if you want so much to go there, it will not be easy for you to always go there. We need transport [funding] to go there.

These children are facing emotional challenges due to the impact of the closure. They’re not going to adhere to the drugs. Some of them are already lost to the clinic. We used to reach out to them. You guys come back, you come for your refills. No one is reaching out in their household. When you call them and their phones are not on, since you know the household, you go there. You remind them. Now they’re missing out.

They’re also not getting support, like school fees. Because most of these positive children are so vulnerable. Just getting scholastic materials, just enough to change this child’s life. All these things are cut off.

The [Ugandan] government will not do services that the USA has been doing. Like, following up these children to come back, or going in the community to talk to them, to instill hope. Even if it takes it over, it will not do that. They will ensure ARVs are maybe there, but children will still die, because only taking medication without hope, or when you’re depressed or when you’re not schooling is something else.