Portraits: A 10-year-old, a house painter and a mom who are running out of HIV pills

A 10-year-old girl who’ll keep going to the local clinic for the medications to suppress the HIV virus — forgetting that it’s now closed.

A house painter who no longer has the strength to do his work.

A teenager who finds comfort in religious music as she wonders why it was her fate to be born HIV positive — and how she will find the medications she needs to keep the virus at bay.

These are three of the dozens of HIV positive people in Zambia we interviewed during a trip there this month to see what the impact has been of the Trump Administration’s suspension and termination of billions of dollars in global health programs.

Administration officials maintain that certain life saving aid — like HIV medications — has been spared. But people on the ground tell a different story.

NPR reached out to the Zambian government for comment on the impact of the cuts and to the U.S. State Department as well. Neither responded to our inquiries.

NPR spoke with dozens of HIV-positive people in Zambia to learn the impact on them. They consistently report chaos and confusion — and, increasingly, people falling ill without their HIV medication. Here are some of their stories.

Dorcas and Theresa Mwanza: ‘She’s a very jovial little girl, but she’s been very miserable’

“Jovial.”

That’s the word Theresa Mwanza, 32, liked to use to describe her 10-year-old daughter, Dorcas. When Dorcas would get home from school, she’d often play house, pretending to prepare nshima — a thick traditional porridge — for her imaginary family. “I’m thinking she’ll be very family-oriented when she grows up,” says Theresa in Bemba, a local language spoken in parts of Zambia.

When NPR met with the family in early April, it had been eight days since both Dorcas and her mom, Theresa, took the last of their HIV medications.

A single mom and an only child, they’ve always taken their medicine together at 8 p.m. each night. The change in routine has confused the little girl.

“She’ll open the tin [where the medicine is kept] and find that it’s empty,” says Theresa. “She’ll run down to the clinic to go and check if she can collect her medication. And then she’ll come back home and say, ‘Oh, you are right. The clinic is closed. They’re not there anymore.’ “

And it seems like their U.S.-funded clinic is not coming back. The doors of the clinic, which services over 2,000 HIV patients, have been locked since the end of January, the staff let go and the furniture largely removed. This clinic didn’t just provide medication, it also provided basic food since HIV medicine cannot be taken on an empty stomach. Theresa and Dorcas lost both.

So far, without their medication, Theresa feels okay. But Dorcas has developed a fever and chills — and she feels weak. Flu-like symptoms are often one of the first symptoms after someone goes off HIV treatment — the level of virus rises and the body tries to fight it off. Worried, Theresa now stays home to tend to her daughter — who often rests on a mat by the tree outside their home. But it means Theresa isn’t going house to house to do laundry and odd jobs, their main source of income.

Theresa tried to get their medications at a clinic run by the Zambian government. It took an hour to walk there only to get turned away. “They keep insisting: ‘You need to get direction or guidance from the clinic where you were on where you will go to next,'” she recalls. But with her neighborhood clinic closed, Theresa isn’t sure what to do.

She thinks back to her two sisters who died of AIDS before medication became available — and free with help from the U.S. “I am now really worried,” she says looking at her daughter. “She’s a very jovial little girl, but she’s been very miserable the past few days.”

Mary Mayongana: ‘What will become of me?’

Mary Mayongana, 42, typically spends her days either at the market selling vegetables or in a small family compound she shares with her family: Her mother, her four children, her two sisters and their children. “All of us live here as one big family,” Mary says, speaking in Bemba.

Now, Mary is confined to that compound. She’s lost access to her HIV treatment and feels weak. She’s also developed an itchy rash, a classic sign of going off HIV medications — it can be an indication that the body is trying to fight off the resurgent virus and the immune system is weakening. And Mary has another challenge: her ankle is swollen from a painful open sore that continues to spread.

Without warning, her U.S.-funded clinic closed on January 28 with a stop work order from the Trump Administration. Now the clinic’s health workers are distributing the remaining supply of medications among all the patients. For more than two months, Mary hasn’t been able to consistently take her HIV medication. Sometimes she’s gone up to 14 days with no HIV medication at all. Right now, she has a few pills and has decided to take them every third day. It’s risky because her body could develop resistance to the drug if it’s not taken daily. But, Mary says, it’s all she has so she needs her supply to last as long as possible.

There are Zambian government clinics that still stock HIV drugs but they’ve been so overwhelmed by HIV patients from the shuttered U.S.-funded clinics that they’ve been forced to ration the medication, giving out a limited supply to each patient. And for Mary, who has no money for transportation, the government clinic seems impossibly far away. It’s a 45-minute walk on a good day.

She’s unsure whether her ankle sore is a result of going off her HIV medications but, she says, the pain and fatigue she feels are going to make it hard to walk to the clinic. She thinks it will take her hours each way. Her mother is urging her to do it anyway — together, she says, they can take a few steps, then rest.

“I spend a lot of time thinking about what is likely to become of me, especially that I’m actually seeing myself wasting away,” says Mary in a flat, quiet voice. She sits on the cement floor of her brick home, her head resting against the wall. “It’s really weighing me down.”

Brian Chiluba: ‘I will leave my children suffering’

Brian Chiluba, 56, is comfortable at the top of a ladder and used to pushing a heavy wheelbarrow full of paint buckets around. He’s a house painter and — with the help of HIV medication, which he’s taken for 15 years — he always had the strength to do his work. But no longer.

“I feel weakness — weak, weak, weak,” he says as his voice cracks.

Since early February, when his local U.S.-funded clinic shut down, he’s struggled to get his medication. At first, he managed to obtain a few pills here and there but, now, he’s out entirely.

Sitting on a wooden bench by the window with one of his three children nearby, he says he’s lost a lot of weight and feels like all the power has been drained out of him.

Brian’s wife also has HIV and has run out of her medication, too. But, so far, she says she feels fine.

The couple went to a nearby government clinic hoping they would be able to get their medications refilled. But, they say, they were told they must bring their medical records in order to register as new patients. So they’ve been going back to their old clinic to get their files. Every time they go, it’s still shuttered. And yet, he says, they have no choice but to keep trying.

“We need to wait until there’s someone at the USAID facility,” he says.

The Zambian Ministry of Health did not respond to requests for comment on this policy.

Brian worries that by the time he gets his medical record and registers at a new clinic, it will be too late. “I’m going to lose my life, and I will leave my children suffering,” he says.

Catherine Mwaloe: ‘I’m a school girl and I don’t have money [for HIV medications]’

When times are hard, Catherine Mwaloe turns to music. She pulls out her phone and scrolls to the emotional, religious songs. Lately, the 16-year-old has been listening to a lot of these songs.

From the two-room house — under a huge mango tree — that she shares with her grandmother, Catherine lets the lyrics of her favorite song, “Nessa’s Holy Spirit,” wash over her:

“Jesus I need you to survive.

Oh come oh! Holy Spirit come oh”

Her grandmother, who has the same name, says Catherine has been grappling with two questions for which there are no good answers.

“She began to ask why she’s taking this medication, and then I had to explain to her that ‘You’re HIV positive,’ ” says Catherine’s grandmother. The girl got the virus from her mother at birth but, her grandmother says, “it’s been very difficult to get her to accept her situation. She says, ‘What is it that I have done to get this illness?’ “

“Holy Spirit come,

Come and have your way”

Lately Catherine’s question of “why” has been superseded by the question of “how.” How will she get her next round of HIV medications when the health center where she got her free HIV medications was funded by the U.S. and has now shut down. She has one month’s supply left and she worries that all the government clinics will charge money for the medications.

“Even if I go there, they [will] say, we should buy medicines. And actually, I’m a school girl and I don’t have money. And [my grandmother] just sells some tomatoes so that she can earn money to provide for the food,” Catherine says, in a low, flat voice as a tear traces its way down her cheek. “I’ve heard that there are many millions of people going to die.”

As Catherine listens to her music, she says, her dream of becoming a surgeon one day feels as if it’ll never come true.

“Come and do your thing,

Come and be the strength when [I] am weak”