NPR News

In April NPR profiled people who couldn't get their HIV drugs. How are they faring now?

By Gabrielle Emanuel

Published September 6, 2025 at 3:51 AM PDT

Pastor Billiance Chondwe has known 9-year-old Diana Lungu since she was born. He helped her mother through a rough pregnancy and during Diana's early years. Diana's mother died of AIDS when Diana was nearing her third birthday. Diana herself was born HIV positive. After the U.S. issued stop work orders in January, she couldn't get the drugs she needs to suppress the virus. Chondwe has since helped her register at a government hospital for these medications.

In April 2025, we published a story with the headline: "Haunted by hopelessness: 12 Zambians share their stories as HIV drugs run out." It looked at the impact of President Trump's cuts to foreign aid and his stop work orders on HIV positive individuals. In August, we reached out to them again as well as others who keep close tabs on the HIV/AIDS situation to see where things stand now. This story is part of our annual series "Whatever happened to ..."

This year Billiance Chondwe has found himself careening between grave concern for his community and guarded optimism.

Chondwe — who is affectionately called Pastor Billy by his congregants in Kitwe, Zambia — knows many people who are HIV positive. So, on January 24, when Secretary of State Marco Rubio issued a memo calling for stop work orders on all existing foreign aid awards, Chondwe watched in horror as many of the U.S.-funded HIV clinics in and around Kitwe suddenly locked their doors.

For Chondwe, that conjured up nightmarish memories of the 1980s, '90s and early 2000s, when HIV had decimated his community. The virus claimed the lives of friends and congregants — and, most painfully, his twin sister.

He worried that these closed clinics foreshadowed a return to that reality. "It brought back what we felt [then]: despair, hopelessness. It was like a rewind," he said in April.

Today that sense of hopelessness has been replaced by a sense of determination and a good deal more hope. While the present is still hard and the future is far from certain, he says, there has been improvement thanks to the Zambian government.

"We are welcomed and we are helped"

After NPR's story came out, a representative of the Zambian government called Chondwe.

The article had documented how people in Chondwe's community were going without their HIV medication that suppressed the virus and kept them from getting sick. Some were already reporting such symptoms as weakness, fatigue, fever, sweats and an unpleasant rash — classic signs of the resurgence of the virus.

All the HIV positive people profiled had something in common: They had received medical care from U.S.-funded clinics that were now shut, and they could not find another medical provider. Some had been turned away from other clinics because they weren't able to obtain their medical records from the closed clinics. Others didn't know where to go. Still others were too sick to make it to a government hospital.

What followed the article's publication was a perhaps surprising series of events. At first, Chondwe says, the government's reaction "was to deny, [saying] that there is no truth in what we were saying."

Yet this wasn't an instance of total denial. The government decided to see if they could substantiate the information. Soon officials arrived in Chondwe's community and asked to meet with many of the people profiled in the article, checking the facts and learning about their situation firsthand.

Chondwe's sense is that prior to the NPR article, the government genuinely did not realize what was happening in Kitwe. Perhaps, he says, that's because some other U.S.-funded HIV clinics in Zambia, including in the capital, had been able to reopen shortly after the stop work orders with waivers Rubio issued that allowed them to resume limited services, like dispensing HIV medication. That was not the case in his community.

The Zambian Ministry of Health did not respond to requests for comment about the steps they took after the article's publication.

Chondwe says conversations with patients convinced the officials to change their attitude. "We gave them proof and then, from there, we saw a partnership," he says.

Billiance Chondwe — known as Pastor Billy — lost his twin sister, Charity, to HIV/AIDS. After she was diagnosed in 1989, he cared for her at home. She died about two years later. "It brought me to my knees," he remembers. Today he is an advocate for HIV positive community members who have struggled to get their HIV medication after U.S. foreign aid cuts.

In mid-June, the officials signed an agreement with Chondwe to help HIV positive community members whose clinics had remained shut. The terms allowed him and a team of volunteers he had assembled to bring these individuals to other facilities: government-run clinics and hospitals. The agreement did not involve any payment or compensation to volunteers.

This arrangement wan a memorandum of understanding. It made the clinics and hospitals aware of the government's support for the work Chondwe and his volunteers were doing.

As a result, when Chondwe or one of his volunteers brings an HIV positive individual to a health care facility they are able to quickly register as new patients so they can get free HIV medications as they had before — even those who had previously been turned away by government hospitals because they did not have their medical records. Because of the memorandum, Chondwe says, his team can now call officials at the district level if a patient is struggling to get services.

"When we go to any government clinic, we are acknowledged, we are welcomed and we are helped," Chondwe says.

His team now consists of 38 volunteers — church members and community members. He estimates that they've helped connect about 3,000 HIV positive people with new providers and clinics.

Catherine Mwaloe, a teenager in Kitwe who contracted HIV at birth, is one of the people they're assisting.

Catherine Mwaloe, 16, who contracted HIV from her mother at birth, did not know where to get her HIV medications after her U.S-funded clinic shut down in late January. After Zambian government officials met with her family, she was able to get the medication she needed to keep the virus at bay. But the food aid she once received has not resumed.

When she first spoke with NPR, she was running low on her HIV medications because her local U.S.-funded clinic had closed. Mwaloe said that she and her grandmother, with whom she lives, were worried that any government clinic would charge for the drugs.

"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," she said in April. "I've heard that there are many millions of people going to die."

After the article came out, she says that government officials visited her home to double-check NPR's reporting. Mwaloe was at school but the officials spoke with her grandmother, who is her primary guardian. Then, Mwaloe says, Chondwe's team helped her connect with a nearby government clinic. She now has a steady supply of the daily HIV medications that keep her alive.

"We're starving a lot"

But Mwaloe and her grandmother have a new and pressing concern: getting food for the 16-year-old's next meal. That's because the U.S.-funded clinic that is now shuttered used to provide basic provisions like fish and beans — standard practice since a person who takes HIV medicine on an empty stomach can feel very ill. That arrangement ended when her clinic got the stop work order in January.

Catherine and her grandmother, who is her guardian, hold hands outside their home. They get by on one meal of porridge a day.

In an interview in late August, Mwaloe said: "From morning, I've not eaten anything, even at lunch. Is that healthy? You only eat when you're going to sleep."

When at school, she says, she tries not to focus on her hunger pangs. "I just ignore this," she says, telling herself " 'I am not hungry' and continuing sadly." Before bed, she and her grandmother eat their one meal of the day: Nshima, a porridge made from ground cornmeal.

Brian Chiluba — a former house painter in his 50s — faces a similar situation.

After his U.S.-funded clinic shut down in late January, his supply of daily HIV treatment drugs began to dwindle. So he'd skip taking the pills some days. Then he ran out entirely. During those months, Chiluba says, he lost a lot of weight and became so weak he could no longer work. He worried the virus was returning. Doctors say HIV wasting syndrome – characterized by unintentional weight loss – can occur when the virus is not in check.

Brian Chiluba lost weight and felt increasingly weak after losing access to the HIV drugs that he'd received from a U.S.-funded clinic for the past 15 years. He is now able to get those drugs from another facility but says he hasn't regained his weight and can barely afford to buy food.

Now, Chiluba has a steady supply of medication thanks to a Zambian government clinic. But he's been unable to regain the weight he lost. He struggles to pay for food and is still too weak to return to work.

"I am feeling okay but I need a balanced diet and I need to work hard to look for food," Chiluba says.

It's not just people who are HIV positive who face new challenges finding food. That's also a concern for many people who used to work for U.S-funded HIV/AIDS clinics and programs and were unexpectedly laid off in late January with the stop work orders.

Geoffrey Chanda worked with the HIV community for 15 years, most recently as a community health worker. His job was to ensure that HIV positive truck drivers on the border between Zambia and the Democratic Republic of Congo had the HIV medications they needed to stay on their daily regimen for months on the road. The goal was to keep them healthy as well as make sure the level of the virus in their bodies was so low they could not spread the infection to others through intimate contact.

Community health worker Geoffrey Chanda used to distribute HIV medications to long-haul truck drivers and sex workers at truck stops like this one near the border of Zambia and the Democratic Republic of Congo. He lost his job because of the U.S. stop work order and has not able to find employment.

The stop work order caused the mobile clinic where Chanda worked to shut down. It has not reopened, and he hasn't been able to find another job in his border town. He says his life has been upended: One of his five children had to drop out of university for lack of funds, and he can't pay for food for his family. "We're starving a lot," he said over text message.

A few hours drive from Chanda's town, Jennifer Mukuka also worked for a U.S.-funded clinic, delivering medications to HIV positive people who lived in remote areas. In her private life, she had taken in a 9-year-old AIDS-orphan: Diana Lungu. As part of the U.S.'s international HIV/AIDS work, funding was provided to support AIDS-orphans and other vulnerable children for critical needs like food and school fees. Last year, more than 6 million children were supported through these efforts, including Lungu.

"I stress myself [out] thinking about Diana — and me, myself, we are almost the same," says Jennifer Mukuka, who is herself HIV-positive and who takes care of Diana, who was born with the virus. When she couldn't get Diana HIV medications because of the U.S. aid cuts, she shared her own medicine.

Diana lost her mother to HIV and her grandmother to COVID-19. She never knew her father. Pastor Billy says that until this year, whatever stability she has had in her life is in large part thanks to the U.S. government PEPFAR program, providing both medicine and basic necessities.

Then Mukuka lost her job — and the food support that Lungu was eligible for. The two have been struggling to afford food and are now three months behind on their rent, according to Chondwe, who has helped coordinate Diana's care since she was born.

Chondwe says he feels a sense of relief as he helps community members access HIV medications. But he also has a daunting feeling about how much needs to be done. He says he stays up at night worrying about how people will get food and find work.

He says he uses donations from community members and people he's connected with abroad to provide transportation to clinics and basic food to the HIV positive individuals his team helps — like Catherine Mwaloe. But he knows that relying on donations and unpaid volunteers is not a long-term strategy. "I'm simply saying, it's not sustainable," he says.

"Triaging a train wreck"

As Chondwe has been navigating this new landscape in his corner of Zambia, Emily Bass has been working to piece together what the HIV/AIDS landscape looks like globally. "I've been really trying to understand where the lights are still on and where they aren't — and why," she says.

Bass is the author of the 2001 book To End a Plague: America's Fight to Defeat AIDS in Africa, which documents the momumental work of President George W. Bush's PEPFAR — the President's Emergency Plan for AIDS Relief. Since its inception in 2003, PEPFAR has received bipartisan support and with $120 billion invested it is the largest commitment by any nation in history to fight a single disease.

Even as President Trump has cut billions in foreign aid, both Republican and Democratic lawmakers have rallied to support PEPFAR and preserve its funding. And Rubio has issued waivers that technically allow programs that provide for lifesaving HIV medications to continue and some limited HIV prevention work.

However, Bass says, the stop work orders and the dismantling of the U.S. Agency for International Development — which ran many PEPFAR programs — have made for major changes and huge variability from one PEPFAR-recipient country to the next.

"We're triaging a train wreck," she says.

A newly published research brief by Physicians for Human Rights, co-authored by Bass, found the disruptions had caused "severe harm." Among the effects: curtailed access to HIV medications, drastically reduced HIV prevention work and damage done to public trust in domestic government and U.S. foreign aid.

"The implications are enormous, not only in these communities affected but globally," says Karen Naimer, director of programs at Physicians for Human Right and a co-author on the report. "The full impacts of these aid cuts are only beginning to unfold."

As Bass has mapped the new landscape, she's found that many U.S.-funded HIV clinics have reopened and are able to provide HIV medications. Yet staff have been "rehired with less stable contracts and lower salaries," she says, explaining that clinics and programs are hedging given uncertainty around funding.

There is also a lot of uncertainty about how PEPFAR will operate in the future. In past years, PEPFAR has engaged in a months-long process with local governments, international organizations and others to develop strategic plans for how different countries and regions will combat HIV/AIDS over the next year or two. Usually, the resulting regional and country plans would be finalized by summer. However, this year, those plans are not yet available.

Adding to the uncertainty: Many HIV clinics and other HIV-related programs have contracts with PEPFAR that will expire at the end of the fiscal year – September 30. The unanswered question is whether their contracts will be renewed in full, extended for just a short term or simply expire.

The State Department, which houses PEPFAR, did not respond to a series of questions NPR sent regarding the state of PEPFAR-funded programs, access to HIV medications in Zambia and other PEPFAR countries and the timing of when Country Operational Plan and Regional Operational Plans will be available.

However, on Thursday, Jeremy Lewin — a senior official for Foreign Assistance, Humanitarian Affairs, and Religious Freedom at the State Department — said the U.S. will procure a new HIV prevention drug for up to 2 million people over the next three years in countries hardest hit by HIV. He said this will serve as a model for how PEPFAR and the Trump administration will approach global health in the future.

"This is the type of thing we're going to do more of," he said at a press briefing. "The administration and Secretary Rubio have been doing a lot of work to refocus and make PEPFAR more effective. Our focus area is in commodities and medical breakthroughs."

Naimer says a lot will depend on how lawmakers decide to fund PEPFAR in the coming fiscal year and whether they reauthorize the program. "We still have a narrow window to act," she says, suggesting that within a matter of months the HIV/AIDS control efforts must be stabilized and strengthened to avoid undoing decades of progress on HIV treatment and prevention.

Pastor Billy delivers a sermon in April to his congregants at the Somone Community Centre, a branch of the Pentecostal Holiness Church in Zambia. He remembers that at the height of the AIDS crisis in the 1990s, the funerals became so frequent that he was sometimes burying people several times a week. Even on Sunday, it would be a quick Mass and, then, to the graveyard. — Pastor Billy delivering a sermon in April to his congregants at the Somone Community Centre, a branch of the Pentecostal Holiness Church in Zambia. He remembers that at the height of the AIDS crisis in the 1990s, the funerals became so frequent that he was sometimes burying people several times a week. Even on Sunday, it would be a quick Mass and, then, to the graveyard. He worried that U.S. aid cuts would return Zambia to that era, but he's connected with government officials who've given him a measure of hope.

Even if PEPFAR is able to continue in force, Bass adds, the sweeping aid cuts overall mean "there's no truly happy ending for this, but there is an opportunity to save things that have been sustained by truly exceptional community-led action" — like what Pastor Billiance Chondwe is doing.