An AIDS orphan, a pastor and his frantic search for the meds that keep her alive

Night had fallen hours ago, but Billiance Chondwe was not slowing down.

On Feb. 20, he frantically tapped retired texts connected WhatsApp, dialed distant acquaintances and near sound messages from his location successful Zambia. He'd region only to adjacent his eyes and deliberation of whom other he could scope retired to for help.

He urgently needed to find medicine for Diana Lungu. She's an orphan, she's 9 — and she's HIV-positive. She'd tally retired of nan regular pills she takes to suppress nan virus. Without nan pills, nan microorganism would surge back.

"I called nan full nighttime … calling everyone," remembers Chondwe, 53, a reverend known successful his organization simply arsenic Pastor Billy. "I slept astir 3 a.m."

One of his messages recovered its measurement to Thailand, wherever Susan Hillis was opinionated successful an airdrome check-in line. It was nan wee hours of nan greeting there, and she was heading location to nan U.S. from a convention of Christian ngo hospitals. As she listened to nan message, Hillis could consciousness nan exhaustion and fearfulness successful Pastor Billy's sound — and she knew really overmuch Diana intends to him.

"I was astir 4 group from checking in, and I had tears successful my eyes and was choked up," recalls Hillis, an epidemiologist who has spent years connected HIV/AIDS work. "I was thinking: 'She's going to die. She is going to die.'"

It was done her activity successful nan religion organization that she first connected pinch Pastor Billy — and learned astir Diana, a woman pinch short cropped hairsbreadth and a cautious but agleam smile.

Over nan years, Pastor Billy and his wife, Catherine Nanyangwe Chondwe, person taken much than 15 orphans into their location — raising them for periods of clip alongside their ain 5 children. "Some were sleeping successful nan kitchen, others successful nan sitting room," he says.

Diana stayed pinch them connected and disconnected for 4 years. There was thing different astir her, they say — a generosity that took them some by surprise. "Maybe location is tea, aliases location is porridge, but immoderate kid adjacent — [Diana] would stock pinch them," Pastor Billy says. The aforesaid point happened erstwhile they gave her toys.

An AIDS orphan who is HIV-positive herself, Diana has mislaid her mother to HIV and her grandma to COVID-19. She ne'er knew her father. Pastor Billy says immoderate stableness she has had successful her life is successful ample portion acknowledgment to nan U.S. government.

Diana's HIV medications and her aesculapian attraction person been provided by a U.S.-funded session pinch a large salmon-colored gross successful her municipality of Kapiri Mposhi. And a U.S. programme supporting AIDS orphans provided Diana pinch monthly nutrient packages — often fish, beans and cornmeal. Proper nutrition is captious erstwhile taking HIV drugs.

PEPFAR — nan President's Emergency Plan for AIDS Relief — paid for each of it.

Then came inauguration night.

Half a world away, successful Washington, D.C., President Trump signed an executive bid pinch a Sharpie, freezing almost each overseas aid. A flurry of stop-work orders followed, arsenic did programme terminations for billions of dollars of world wellness programs.

From 1 time to nan next, Diana's HIV session went from providing lifesaving medications to closing its doors. There was nary informing and nary clip to get her aesculapian record and transportation it to different clinic. The monthly package of nutrient besides stopped without warning.

By that time, Pastor Billy's religion had transferred him to a different town. He'd recovered personification successful Diana's organization — Jennifer Mukuka — to invited her in.

"I don't person much, but I conscionable person this large heart," says Mukuka. She has been capable to carnivore nan costs of raising Diana because of nan assistance from PEPFAR, which besides covered fees for her schoolhouse books and uniform.

And that benignant of information has fixed Diana abstraction to dream of her ain future. On her 20-minute locomotion to schoolhouse — down dusty, craggy roads — she often imagines becoming a doctor, pinch a achromatic overgarment and stethoscope, moving from 1 bedside to nan next.

On that February nighttime — erstwhile Pastor Billy reached retired to Hillis and almost a twelve others — he had conscionable learned that Diana had tally retired of her regular HIV medications.

Hillis remembers reasoning to herself successful that airdrome line: "If it's happening to her, it's happening to a batch of people."

"Successful" and "unsung"

Diana was 1 of 6.6 cardinal orphans and susceptible children supported past twelvemonth by PEPFAR.

PEPFAR spokespeople often constituent retired that nan programme has saved much than 26 cardinal lives since its motorboat successful 2003. And it has besides helped children connected a monolithic scale. Starting successful 2006 — conscionable a fewer years aft then-President George W. Bush created nan inaugural — a bipartisan squad of Democrats and Republicans made judge that 10% of nan backing each twelvemonth was group speech for AIDS orphans and susceptible children. Last fiscal year, PEPFAR spent conscionable complete $200 cardinal connected these youngsters — astir $31 per kid supported.

AIDS often kills group successful their childbearing years and has near millions of orphaned children successful its wake. PEPFAR's imagination was to alteration section families to return successful these orphans by providing basics — not only medicine but besides food, clothing and schoolhouse fees, arsenic good arsenic psychosocial support to reside stigma. The programme defined orphans arsenic children who had mislaid 1 aliases some parents to AIDS, and nan children did not needfully person HIV themselves.

Eric Goosby — nan infectious illness expert who oversaw PEPFAR from 2009 to 2013 — says it's difficult to overstate nan effect of this programme that is astatine erstwhile "very successful" and "largely unsung."

"The orphan-and-vulnerable-children consequence that PEPFAR created was bigger than nan Catholic Church, each added up successful each country, successful position of nan number of orphans saved," says Goosby, now a professor of medicine astatine nan University of California, San Francisco. "That was nan largest effort connected nan planet."

Now it's mostly connected hold.

In an emailed statement, nan U.S. State Department said that while HIV curen and attraction are allowed to continue, arsenic good arsenic prevention of mother-to-child transmission, "all different PEPFAR-funded services are being reviewed for appraisal of programmatic efficiencies and consistency pinch United States overseas policy."

The section did not respond to NPR's questions astir erstwhile nan reappraisal would beryllium completed and what nan 6.6 cardinal orphans and susceptible children, arsenic good arsenic their caregivers, should do successful nan meantime. The connection did opportunity that children and adults who are some HIV-positive and malnourished tin get nutrient support. While Diana has mislaid her nutrient packages and is often hungry, she is not considered malnourished, according to Pastor Billy and Mukuka.

How fund negotiations unfold will apt effect which parts of PEPFAR continue.

"Everything was stopped, and it's not coming backmost — isolated from [HIV] treatment," says 1 U.S. civilian servant who has spent years moving astatine precocious levels connected nan United States' HIV/AIDS efforts and who requested anonymity because they are concerned that speaking retired could harm their career. This civilian servant said nary of nan unit members progressive successful nan orphans programme was moved to nan State Department erstwhile nan U.S. Agency for International Development (USAID) was dismantled arsenic an independent agency.

Since nan overseas assistance frost was announced, Hillis has been reaching retired to her web of colleagues and friends each complete nan world to amended understand their situation. That web was built up during nan 25 years she spent astatine nan U.S. Centers for Disease Control and Prevention arsenic a elder advisor pinch a attraction connected HIV and susceptible children. She past spent 7 years astatine PEPFAR. During Trump's first term, she was picked to lead a $100 cardinal inaugural to usage faith-based groups to beforehand HIV/AIDS work. She was fto spell connected nan ninth time of Trump's 2nd term.

Between emails, telephone calls and matter messages, Hillis has been keeping way of nan business connected nan crushed successful a assortment of countries. "Now, a batch of families pinch orphans are hungry," she says.

In that airdrome statement successful Thailand, Hillis remembers panicking astir Diana's fate.

"I conscionable thought, 'This small girl's gonna die. She has nary chance unless personification tin get her medicine successful nan mediate of agrarian Zambia. Who's gonna do that?'" she says.

Flashing backmost to nan decease of his twin

For Pastor Billy, location was a very individual consciousness of urgency.

Growing up successful Kitwe, Zambia, he was 1 of 13 children. During meals successful nan family's three-room house, he ever sat adjacent to his copy sister and champion friend: Charity. "We [would] eat from nan aforesaid plate," he says. And they'd play. She'd footwear nan shot ball pinch him. He'd skip statement pinch her. "We were truthful close. It was lovely."

When nan twins became teenagers, Pastor Billy says that a businessman lured Charity away. This businessman promised a much luxurious manner than their family could offer. The twins' begetter was a navigator astatine nan section hospital.

But erstwhile Charity returned from spending clip pinch nan businessman, she was sick.

"She developed thing for illustration a rash — erstwhile she pressed [the lesions], h2o [came out]," remembers Pastor Billy. The rash dispersed each complete her look and arms and soon down to her legs.

At nan session successful Kitwe, she was diagnosed pinch HIV/AIDS. At nan time, successful 1989, location were nary medications aliases treatments for AIDS successful Zambia.

So Billy nursed her astatine location successful their kitchen. Soon, she couldn't locomotion aliases moreover stand. Still today, he tin instantly conjure up nan image of her skeletal framework and nan smell that permeated done nan location arsenic her information deteriorated.

"Sometimes if I [was] out, she would beryllium calling for me," he says. "There was 1 clip I stopped going to school, for illustration for a month, because she only wants maine to beryllium around."

Two years aft her symptoms started, Charity died. "It brought maine to my knees," Pastor Billy remembers. "It brought maine to a constituent wherever [I realized] nary matter what I tin do arsenic a quality being, location is simply a limit. But astatine that clip of sensing that limitation, I turned to God."

He became a pastor successful 1994 arsenic HIV/AIDS pounded nan state and region. Until nan 1980s, life expectancy had been steadily rising successful Zambia. But arsenic nan HIV pandemic took off, life expectancy plummeted from 56 to 46 complete nan people of 15 years, according to Mary Mahy of nan Joint United Nations Programme connected HIV/AIDS.

When PEPFAR was founded successful 2003, location were more than 10 cardinal children globally who had mislaid 1 aliases some parents to AIDS. "When children are deprived of a genitor early successful life, they person a importantly accrued consequence of vulnerability to violence, abuse, neglect, exploitation, schoolhouse dropout, poverty," explains Hillis. She co-authored a paper successful The Lancet successful May citing investigation showing that, crossed 14 countries, children who person mislaid 1 aliases some parents are astatine six times nan consequence of contracting HIV.

Part of what drove Bush to incorporated orphans and susceptible children into PEPFAR was a belief consciousness of compassion, says John Stover, vice president astatine Avenir Health, a group that analyzes information and policies for nationalist wellness programs. "[Bush] had a batch of support from Christian groups — evangelicals and others — who were mostly focused connected improving nan batch of children successful Africa," he says.

There was besides a applicable logic for caring for this group of children, says Dr. Chris Beyrer, head of nan Duke Global Health Institute. Children who had mislaid their parents were "perceived to beryllium very susceptible to groups for illustration militias and extremist organizations and gangs," he explains, pointing retired that this was 1 of nan reasons President Bill Clinton declared AIDS a threat to nationalist security.

"No, no, no, no, no"

Pastor Billy besides saw AIDS arsenic a threat. As a caller pastor, he saw members of his congregation commencement falling sick conscionable for illustration Charity had. "They were showing symptoms of my copy sister," he recalls. "I was like, 'No, no, no, no, no.'"

The funerals became truthful predominant that Pastor Billy was sometimes burying group respective times a week. Even connected Sunday, it would beryllium a speedy Mass and, then, to nan graveyard.

When services wrapped up, he'd often person different time-sensitive task: figuring retired what would hap to nan orphaned children. He'd scramble to find relatives and organization members to return them in, fixed nan stigma of being associated pinch an AIDS death. And if thing other worked, he and his woman would unfastened their home.

"My wife's nursing our first kid — [and] she's now a mother of seven," he remembers.

"It felt for illustration a miracle"

In 1996, acold from Zambia, location was an bonzer move of events, says Beyrer. Fifteen years aft AIDS came connected nan scene, a very effective curen was discovered: a operation of narcotics that could suppress nan virus's replication to highly debased levels.

The results are often described successful biblical terms.

"People who are connected their deathbeds, wasting distant pinch diarrhea and thrush and fevers, would get connected these meds and, literally, emergence up disconnected their deathbeds," says Beyrer. "That's what was called nan Lazarus effect — for illustration Lazarus raised from nan dead." The patients, he says, would "gain weight and spell backmost to schoolhouse and parenting and working. And it felt for illustration a miracle."

But this was a occurrence only for high-income countries. Prior to PEPFAR, nan curen costs truthful overmuch that it was fundamentally unavailable for group successful sub-Saharan Africa, wherever nan pandemic was nan worst. Only erstwhile PEPFAR was established did low- and middle-income countries partake successful nan miracle.

"In Scripture, Jesus said, 'I will not time off you arsenic orphans,'" says Pastor Billy, recalling nan transition that captured his alleviation when, successful 2004, PEPFAR arrived successful Zambia. "Despair was taken distant from families."

Hillis remembers a travel to Africa, aft PEPFAR was launched, wherever she realized that nan roadside carpenters were nary longer displaying caskets for waste — a brisk business erstwhile AIDS was astatine its height. Instead, they were lining nan thoroughfare pinch handmade beds. "Both of them you laic down in," Hillis remembers reasoning to herself. But one, "you laic down to remainder because you're going to get up successful nan greeting and unrecorded a vibrant life."

As nan narcotics enabled parents to past and springiness commencement to children who were not infected pinch nan virus, Pastor Billy focused much afloat connected nan orphans who'd been near behind.

It was successful 2016 erstwhile he met Diana, conscionable days aft she was born. He'd been helping her mother during a unsmooth gestation wherever she was "always sick." And he went to nan infirmary hoping to observe different kid calved HIV-free to an HIV-positive mother, acknowledgment to modern medications.

But arsenic Diana's first twelvemonth unfolded, it became clear that she needed to beryllium tested for HIV. She "was ever suffering from diarrhea. She was weak, ever underweight," recalls Pastor Billy. He was near wondering whether her mother hadn't taken her HIV medicine arsenic consistently arsenic necessary. He helped get Diana tested for HIV, and then, erstwhile nan results confirmed his suspicion, he made judge she sewage connected medicine to suppress nan microorganism astatine 1 of nan U.S.-funded clinics successful town.

Diana's life stabilized until 2 devastating family deaths. The girl's mother passed distant arsenic she neared her 3rd birthday. Diana moved successful pinch her grandma — and Pastor Billy and his woman started to thief more. For respective years, Diana and her grandma stayed successful nan pastor's location whenever they walked nan 7 miles into municipality to entree nan clinic. And successful 2021, erstwhile Diana's grandma died, Diana moved in.

"You spot pieces of brokenness astatine different stages successful her life," says Pastor Billy. "My bosom usually bends toward brokenness."

For a year, Diana grew up among his ain children. She often reminded Pastor Billy of his copy sister.

Then, successful 2022, Pastor Billy and his woman faced a difficult decision. The religion asked them to move to a metropolis 4 hours away. He wanted to return Diana but besides felt she would use from staying successful Kapiri Mposhi, nan only spot she'd really known. Plus, he had dreams of continuing his belief studies successful nan U.S. and knew it could beryllium logistically challenging to formally adopt Diana truthful that she could recreation pinch his family.

So Pastor Billy took nan caller duty — but makes a constituent to sojourn Diana successful her caller location regularly. Whenever he does, Diana's look lights up. In that smile, he felt a consciousness of hope: Diana's procreation mightiness beryllium nan past 1 truthful severely scarred by AIDS, he thought.

Others felt nan same. "We've been truthful adjacent to genuinely having an AIDS-free procreation of kids," says Dr. Rachel Vreeman, chair of nan Department of Global Health and Health Systems Design astatine nan Icahn School of Medicine astatine Mount Sinai. "And that is wholly astatine consequence correct now."

"There isn't capable food"

In February of this year, Diana had her first hint that thing was amiss.

On that 20-minute locomotion to school, dreams of her early stethoscope were accompanied by pangs of hunger. The monthly packages of nutrient nan U.S. had provided for Diana had stopped. And Jennifer Mukuka had mislaid nan stipend she sewage for transporting medications from Diana's U.S.-funded HIV session to far-flung patients.

Now, there's often not capable nutrient successful nan three-room location they stock pinch Mukuka's big girl and 2 young grandchildren.

"Sometimes we conscionable person 1 repast per day," explains Mukuka. "In nan evening, we conscionable navigator porridge."

In a quiet sound and speaking successful Bemba, her autochthonal language, Diana says, "Because location isn't capable food, I sometimes don't consciousness well." HIV medicine must beryllium taken pinch food; different it tin make nan personification consciousness very unwell — 1 of nan reasons PEPFAR usually provided nutrient on pinch drugs.

It's not conscionable nutrient that's successful short supply. Her narcotics are nary longer readily available. Diana's U.S.-funded session closed truthful quickly aft nan stop-work orders came retired successful precocious January that Mukuka couldn't get Diana's aesculapian record aliases a transportation missive allowing her to restart attraction astatine a Zambian government-run clinic. So Mukuka travels to adjacent clinics begging for medicine to past Diana until they tin get nan documents she needs to transportation to nan authorities session — aliases until nan U.S.-funded session reopens, if it does.

The State Department has issued waivers that lifesaving curen tin continue, including curen and attraction for HIV. In an emailed statement, nan section said that nan organizations implementing lifesaving HIV programs "were notified and urged to resume approved work delivery. Agencies person been moving pinch their implementers to resume activities arsenic quickly arsenic possible." 

However, galore U.S.-funded clinics person not resumed services yet. Where Diana lives, PEPFAR backing for HIV clinics came via USAID, which has been dismantled by Trump's Department of Government Efficiency. Without USAID, it has been difficult for services and programs to resume moreover if they person a waiver. Diana's erstwhile session has not reopened. Pastor Billy has mislaid dream that it mightiness unfastened its doors again. "It's closed forever," he says.

"We spell to different centers, and [we're] conscionable virtually scrounging for medication. Sometimes they springiness america a two-week supply, sometimes a one-week supply," says Mukuka, besides speaking successful Bemba.

But a fistful of times, nan scrounging hasn't yielded anything. That intends they are sometimes wholly retired of Diana's medications. Mukuka says she wakes up successful nan mediate of nan nighttime worried astir what to do.

"I accent myself [out] reasoning astir Diana — and me, myself, we are almost nan same," says Mukuka, who is besides HIV-positive. She recalls her nighttime statement astir whether she should springiness Diana her ain HIV pills that she gets from a authorities hospital.

She weighs nan dilemma: Diana is young pinch her full life up of her — she needs nan pills. But Diana is besides reliant connected her, arsenic are her girl and grandchildren. In nan end, she settled connected an answer: "Rather than letting her spell without medication, I springiness her my medication," says Mukuka.

That worries Pastor Billy, who says: "God prevention Diana. That she doesn't create symptoms because nan dosage was excessively overmuch aliases was little aliases it mightiness beryllium wrong."

Even past location are situation points — for illustration nan nighttime of Feb. 20, erstwhile Pastor Billy learned that Diana was wholly retired of medicine. Eventually that night, he recovered a man 1 municipality complete from Diana who could help. "He said, 'We tin stock for 5 days,'" recalls Pastor Billy, who quickly went to his religion to solicit donations for nan money needed to carrier nan medications successful a shared taxi from nan adjacent municipality to Diana's town.

Diana has, astatine times, gone a week aliases 2 without her medication, Mukuka admits. She knows that erstwhile group skip their regular HIV medications, nan microorganism tin go supplier resistant. "When I couldn't get medicine for Diana, I was highly stressed," she says.

Pastor Billy and Mukuka person spent months trying to get Diana's record from nan session truthful she tin registry astatine nan closest authorities hospital. The Zambian Ministry of Health did not respond to requests for remark astir why its aesculapian accommodation require past aesculapian files, fixed nan situation. 

As they navigate nan process, Diana has been taking immoderate proviso they tin get. "Two weeks, 1 week, 2 weeks, sometimes moreover days," says Pastor Billy. 

But this past week, he says, he breathed a sigh of alleviation erstwhile he sewage a telephone telephone announcing that she had been capable to get a month's proviso of her medicine from nan territory hospital. "She's now getting nan medicine, but nan consistency is [still] not there," he says, noting that she utilized to get a six-month supply.

He says he feels surrounded by warnings astir what mightiness happen. At his church, others are falling sick without their HIV medications. And he has sent Hillis a connection astir really he's starting to announcement that carpenters are displaying caskets again connected nan roadside.

"Kids will spell hungry"

While nan Trump management has, successful nan days and weeks pursuing nan inaugural proclamations astir stiff aid, made a committedness to providing lifesaving curen for illustration Diana's drugs, nan imaginable of different support for AIDS orphans — food, clothing, bedding, schoolhouse fees, counseling — is little promising.

"Kids will spell hungry. Kids will driblet retired of school. Kids will beryllium subjected to transactional activity to beryllium capable to survive. This is precisely what will happen," says nan U.S. civilian servant who requested anonymity for fearfulness of retribution. "It's conscionable perfectly atrocious, successful my opinion, that we're now bringing back, potentially, different procreation of HIV-positive young people, which could person been wholly avoided."

Goosby, who utilized to tally PEPFAR, is adamant that nan entirety of nan programme for orphans and susceptible children should beryllium allowed arsenic portion of nan waiver for lifesaving aid.

"What could beryllium much lifesaving than taking a child, feeding them and educating them?" he says, arguing that interventions that aren't a pill tin still beryllium lifesaving.

"It really, genuinely does consciousness that we are going backward," adds Beyrer of Duke.

For Diana and Mukuka, their dream is pinned to mini snacks and bladed integrative baggies — immoderate filled pinch astir a 4th cup of flour, others pinch a akin magnitude of sugar. They usage immoderate money Pastor Billy tin spare to bargain nan supplies and waste them to neighbors. Each goes for nether 20 cents. They dream it will adhd up to capable money for nutrient and nan basics for schoolhouse — books, notebooks and a uniform. But Mukuka must besides provender her girl and grandchildren — and salary rent.

On a Wednesday successful April, Pastor Billy sewage up early to make nan hourslong thrust to cheque connected Diana. He caught her earlier she group disconnected connected her locomotion to school. She lit up, arsenic usual, erstwhile she saw him. She calls him "father." They took pictures together, making goofy faces.

Then it was clip for her to caput to schoolhouse — and for Pastor Billy to thrust backmost home, wondering what to do next. These months of uncertainty, on pinch nan frantic searches for medicine and food, person highlighted nan vulnerability of nan systems he utilized to dangle connected — and besides Diana's vulnerability.

He sewage into nan car reasoning that his plans to study belief successful nan U.S. mightiness request to return a backmost spot to Diana's needs.

"Love is not personification who visits and takes a image and puts it connected nan fridge," he says. Perhaps, he thinks, he and his woman should enactment successful Zambia — and adopt Diana.