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Lesotho finds its HIV care system unraveling and patients in despair in the wake of US cuts

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HA LEJONE, Lesotho (AP) — In the snow-topped mountains of Lesotho, mothers carrying babies on their backs walk for hours to the nearest health clinic, only to find HIV testing isn’t available. Centers catering to the most vulnerable are shutting their doors. Health workers have been laid off in droves. Desperate patients ration or share pills.

This Lesotho was unimaginable months ago, residents, health workers and experts say. The small landlocked nation in southern Africa long had the world’s second-highest rate of HIV infections. But over years, with nearly $1 billion in aid from the United States, Lesotho patched together a health network efficient enough to slow the spread of the epidemic, one of the deadliest in modern history.

Then, on Jan. 20, the first day of U.S. President Donald Trump’s second term, he signed an executive order freezing foreign aid. Within weeks, Trump had slashed overseas assistance and dismantled the U.S. Agency for International Development. Confusion followed in nearly all the 130 countries with USAID-supported programs. Nine months later in Lesotho, there’s still little clarity.

With the single stroke of a distant president’s pen, much of a system credited with saving hundreds of thousands of lives was dismantled.

It’s a moment of chaos and temporary solutions

Weeks ago, the U.S. announced it would reinstate some of its flagship initiatives to combat HIV worldwide. Officials here applauded the move. But the measures are temporary solutions that stress countries must move toward autonomy in public health.

The State Department told The Associated Press in an email that its six-month bridge programs would ensure continuity of lifesaving programs — including testing and medication, and initiatives addressing mother-to-child transmission — while officials work with Lesotho on a multiyear agreement on funding.

Those negotiations will likely take months, and while programs may have been reinstated on paper, restarting them on the ground takes considerable time, Lesotho health workers and experts told AP.

HIV-positive residents, families and caregivers say the chaos that reigned most of this year has caused irreparable harm, and they’re consumed with worry and uncertainty about the future. Most feel deep disappointment — even betrayal — over the loss of funds and support.

“Everyone who is HIV-positive in Lesotho is a dead man walking,” said Hlaoli Monyamane, a 32-year-old miner who couldn’t get a sufficient medication supply to support him while working in neighboring South Africa.

HIV prevention programs – targeting mother-to-child transmission, encouraging male circumcision, and working with high-risk groups including sex workers and miners — were cut off. Unpaid nurses and other workers decided to use informal networks to reach isolated communities. Labs shuttered, and public clinics grew overwhelmed. Patients began abandoning treatment or rationing pills.

Experts with UNAIDS — the U.N. agency tasked with fighting the virus globally — warned in July that up to 4 million people worldwide would die if funding weren’t reinstated. And Lesotho health officials said the cuts would lead to increased HIV transmission, more deaths and higher health costs.

Calculating how many lives are lost or affected is a massive task, and those responsible for tracking and adding data to a centralized system were largely let go.

Lesotho Health Secretary Maneo Moliehi Ntene and HIV/AIDS program manager Dr. Tapiwa Tarumbiswa declined repeated requests to be interviewed or comment about the aid cuts. But Mokhothu Makhalanyane, chairperson of Lesotho’s legislative health committee, said the impact is huge, estimating the country was set back at least 15 years in its HIV work.

“We’re going to lose a lot of lives because of this,” he said.

Lesotho reached a milestone late last year — UNAIDS’s 95-95-95 goal, with 95% of people living with HIV aware of their status, 95% of those in treatment, and 95% of those with a suppressed viral load. Still, the nation must care for the estimated 260,000 of its 2.3 million residents who are HIV-positive.

Overall, Lesotho and even global HIV efforts accounted for small parts of the United States’ massive international aid efforts. USAID spent tens of billions of dollars annually. Its dismantling has rocked the lives of millions of people in low- and middle-income nations around the world.

For patients, ‘this has been the most difficult time’

For many in this mountainous country and elsewhere, a positive HIV test 20 years ago was akin to a death sentence. If untreated, most people with HIV develop AIDS, acquired immunodeficiency syndrome. At the height of the epidemic in 2004, more than 2 million people died of AIDS-related illness worldwide — 19,000 in Lesotho, UNAIDS estimated.

In 2003, the U.S. launched the President’s Emergency Plan for AIDS Relief. PEPFAR became the largest commitment by any nation to address a single disease, and its main implementing partner was USAID. PEPFAR became so important and well known in Lesotho and other countries that health professionals and residents use the term as shorthand to refer to any HIV aid.

When foreign assistance was frozen, Lesotho lost at least 23% of PEPFAR money, putting it in the top 10 countries for share of such funding cut, according to the Foundation for AIDS Research.

Mapapali Mosoeunyane is among Lesotho residents who credit PEPFAR with helping save them. After learning she had the virus in 2009, she was certain dying was just a matter of time. Neighbors gossiped, she was fired, and she considered giving up her two young sons for adoption.

But around 2013, she got access to antiretroviral medication — which suppresses HIV levels in the blood, with the potential to bring it to undetectable levels. In 2016, Lesotho was the first African country to “test and treat all” — everyone who tested positive was prescribed ARVs. That work, officials say, was possible because of PEPFAR.

Today, 62-year-old Mosoeunyane leads a peer support group in her village, Ha Koloboi. Neighbors ask for advice and trust her with their green medical booklets, where they record medical history, viral load, symptoms and medications.

Lately, the group mostly worries — about the future, losing medication access, getting sick again.

“This has been the most difficult time for me,” Mosoeunyane said.

Many in Mosoeunyane’s group wish Trump himself could hear their concerns. “Trump’s decision is already translating into real life,” said Mateboho Talitha Fusi, Mosoeunyane’s friend and neighbor.

The worries span Lesotho society: from rural to urban, low to middle income, patients to officials. Many Basotho – as people in Lesotho are known – feel hopeless.

Since aid was cut, confusion and changes haven’t stopped

When Trump dissolved USAID, Lesotho leaders said they tried to talk to U.S. officials, even through their South African neighbors after failing to connect directly. But, they said, they got more information from news reports.

For Lisebo Lechela, a 53-year-old sex worker turned HIV activist and health worker, the news was fast and blunt. Days after Trump’s order, she was about to distribute medication, but a call from her boss interrupted her.

“Stop work immediately,” she was told.

Lechela’s organization, the USAID-funded Phelisanang Bophelong HIV/AIDS network, had drop-in centers at gas stations where sex workers could seek services. Workers set up tents outside bars with condoms and the prevention medication known as PreP. Teams delivered medication directly to patients who wouldn’t step foot in public health clinics, for fear of discrimination.

Lechela’s group earned the trust of the skeptics and the stubborn. All that work is gone, she fears. She still gets calls from people desperate for services and refills. She does what she can, and their stories haunt her.

Among them is a textile factory worker who turned to sex work at night to support her three children. She used to take PrEP and isn’t sure how she’ll protect herself. Most clients won’t use condoms, she said, some turning violent if sex workers insist.

“I have to put bread on the table,” said the woman, speaking on condition of anonymity because her husband, who works in South Africa, wouldn’t approve of her sex work. She can’t miss a day of factory work to wait in line at a clinic.

Visiting the woman at home, all Lechela could do was demonstrate how to use a female condom – and hope her clients wouldn’t notice or protest.

With nearly all community groups and local organizations like Lechela’s closed and 1,500 health workers fired, some Lesotho officials see overdue signs that their nation and others must stop relying on international aid.

“This is a serious wake-up call,” said Makhalanyane, the health committee chair. “We should never put the lives of the people in the hands of people who are not elected to do that.”

Rachel Bonnifield, director of the global health policy program at the Center for Global Development, called the Trump administration’s new vision for PEPFAR — with funds sent directly to governments rather than through development organizations — ambitious but high-risk.

“It is disrupting something that currently works and works well, albeit with some structural problems, in favor of something with high potential benefits … but is not proven and does not currently exist,” she said, noting that U.S. House Republicans recently said they’d like to see PEPFAR funding cut in half by 2028.

Lesotho had made recent gains

UNAIDS’ main goal is to end the AIDS epidemic as a public health threat by 2030. Lesotho had made enough progress in reducing new infections and deaths to be on track, according to Pepukai Chikukwa, UNAIDS’s country director in Lesotho.

But after the aid cuts, things were “just crumbling,” she said, though she commended Lesotho’s efforts to mitigate the impact.

“Lesotho’s made progress one should not overlook; at the same time, it is still a heavily burdened country with HIV.”

Chikukwa was optimistic about the September announcement by the U.S. State Department — which took over implementation of foreign aid programs — that it would temporarily reinstate some lifesaving programs, including one to prevent mother-to-child HIV transmission. She also applauded U.S. efforts to buy doses of a twice-a-year HIV prevention shot and prioritize them for pregnant and breastfeeding women in low- to middle-income countries, including Lesotho, via PEPFAR.

“We lost some ground,” she said. “The uncertainty was very high; now there is some hope.”

But it’s not clear how much the U.S. bridge programs will “close the gap,” added Chikukwa, even as she’s leaving Lesotho. Her role was eliminated because of the aid cuts. The South Africa UNAIDS office will oversee Lesotho, she said, but she wasn’t sure where she’d be reassigned.

In its email to AP, the State Department said Secretary Marco Rubio had approved lifesaving PEPFAR programs and urged implementers to resume their work. The email emphasized that officials will work with Lesotho to continue providing health foreign assistance, but didn’t give specifics about the amount of funding.

Lesotho funded only 12% of its own health budget. The U.S. and other foreign donors provided the rest. USAID alone accounted for 34% of the budget; the U.S. Centers for Disease Control and Prevention, 26%, according to a May presentation to lawmakers.

Health committee chair Makhalanyane said this month that it remains unclear how much U.S. aid is being reinstated, even if temporarily. There had been only verbal promises, nothing in writing, he noted, and hundreds of health workers who had been promised they’d be absorbed by the national health system remain unemployed.

Unlike other PEPFAR-supported countries, Lesotho funded medication for 80% of its HIV patients — a figure officials tout as they try to move toward a self-sustaining system. Still, the aid cuts sparked panic over supply and distribution.

Lesotho regularly gave patients a six- to 12-month supply to help its mobile population, including many who work in South Africa, stick with treatment. But when the cuts were announced, some nurses gave out even more drugs than usual.

Nurses were told to cut back. Patients grew alarmed.

Miner Monyamane said he got a three-month supply, not his usual 12. So instead of continuing to work in South Africa, he decided to remain in his small village of Thaba-Tsoeu Ha Mafa. Like many miners, he chose his health over a job and steady paycheck. He fears diseases such as tuberculosis — a leading cause of death in Lesotho, attributed to weakened immune systems — may creep up on him if he interrupts treatment.

‘You can’t just hang a shingle’

The system propped up by foreign aid was always meant to be temporary. But public health experts say the shift to Lesotho and other countries becoming self-reliant should have been gradual.

At the United Nations General Assembly last month, Lesotho Prime Minister Samuel Matekane acknowledged the threat posed by declining foreign aid but fell short of pointing fingers. He said Lesotho is mobilizing domestic resources to address gaps.

But Catherine Connor, of the Elizabeth Glaser Pediatric AIDS Foundation, emphasized that “any step backward creates a risk of resurgence.”

In the 16 years her organization has worked in Lesotho, HIV transmission from mother to child dropped to about 6% from nearly 18%. Lesotho’s government should get credit, Connor said, but her group and others were key in targeting children’s treatment and prevention.

Since 2008, Connor’s group received more than $227 million from the U.S. for Lesotho programming, USASpending.gov data shows. This fiscal year, about half the work it planned has been terminated.

“You can’t just hang a shingle that says, ‘Get your ARVs here,’ and people line up,” Connor said.

Most at risk, she and others stressed, are children. As of late August, half of PEPFAR funding targeted toward children in Lesotho was terminated, and 54% of infants tested for HIV before their first birthday in fiscal year 2024 were evaluated by programs that had been cut, according to Foundation for AIDS Research data.

“When a child never gets diagnosed, it feels like a missed opportunity,” Connor said. “When a child who was receiving treatment stops getting treatment, it feels like a crime against humanity.”

A lack of trust in what remains of the system

Rethabile Motsamai, a 37-year-old psychologist and mother of two, has worked since 2016 for aid-funded organizations. But months ago, her HIV counselor role was eliminated.

She worries for the populations her work served.

“They have to travel for themselves to the facilities — some are very far,” she said, adding that she knows some patients simply won’t try. “They’ll just stop taking their medication.”

Those who do make the trip may be met with a dead end. Clinics have continued to close.

For Lechela — the longtime activist — the upheaval and loss of her job mean she once again depends solely on sex work. As she walked by the closed doors of her former clinic, passersby stopped and begged her to reopen.

“I don’t trust anyone else,” a young woman called out. “Please! Please!”

Lechela smiled but couldn’t bring herself to reply. Like many here, she simply has no answers.

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Pascalinah Kabi and Limpho Sello in Maseru, Lesotho, and Thalia Beaty in New York contributed.

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For more on Africa and development: https://apnews.com/hub/africa-pulse

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The Associated Press receives financial support for global health and development coverage in Africa from the Gates Foundation. The AP is solely responsible for all content. Find AP’s standards for working with philanthropies, a list of supporters and funded coverage areas at AP.org.

By RENATA BRITO
Associated Press