The City Losing Its Children to H.I.V. (Published 2021)
A pediatric outbreak in a remote city in Pakistan shows the urgency of global health after Covid.
One day in February 2019, Nazeer Shah carried his 1-year-old daughter, Eman, into a medical clinic. The doctor there, Imran Arbani, was immediately alarmed: The girl was limp and lethargic, her head flopped over on her father’s shoulder. Her breathing was shallow and fast. She was asleep, hard to rouse, except when she woke to cough. She drooled from her mouth. Her tongue was covered with a thick white coating, which Arbani recognized as thrush, a condition that usually indicates a weakened immune system. At around 11 pounds, she was frighteningly underweight.
Shah told the doctor that Eman was born healthy and was well until three months earlier, when she began having diarrhea daily. Her weight dropped precipitously; she spiked fevers regularly. Every day she seemed worse than the day before. Shah handed the doctor a green plastic bag filled with assorted syrups and pills — more than a dozen different medications. These were all the things she had tried, he explained. Nothing helped. He had taken her to several doctors here in Ratodero, an impoverished city in southeastern Pakistan, and to specialists in Larkana, a city roughly 20 miles to the south. He couldn’t get any clear answers.
Shah lives close to Arbani’s clinic but was initially hesitant to take Eman to him because his specialty was urology. Arbani, however, is used to practicing family medicine as well. “A doctor is a doctor,” he says. “The people do not treat doctors who are specialists as specialists. I deal with a lot of general problems too.” Arbani, who has thick, expressive eyebrows and speaks in quick, forceful clips, told Shah that he wanted to test the girl for the human immunodeficiency virus.
This article was supported by the Pulitzer Center.
“Doctor, are you joking, saying she might have H.I.V.?” Shah replied. “How is it possible?” But it was seemingly the only test that had not been done yet, so Shah drove Eman on his motorbike to a local laboratory, where a health care worker pricked her finger for a drop of blood. They waited outside for half an hour, until Shah was given a slip of paper. “Weak positive,” it read.
“I was still confident at that point,” Shah told me. “It could be negative.” He took the results to Arbani, who suggested that Shah send another test to a satellite lab in Larkana run by Aga Khan University Hospital in Karachi, one of the country’s premier academic medical centers. Afterward, Shah returned to Arbani’s clinic so that together they could look at the results, which were available online. When they saw the word “reactive,” Shah began to weep.
Arbani counseled him on the next steps and advised that Eman go to Karachi, more than 300 miles away, because the closest H.I.V. treatment facility, in Larkana, was set up to treat adults. Shah, who had a stable bank job at the time, was able to scrounge up the 2,400 rupees, or about $15, for his family’s bus fare. (The average household income in Pakistan is around $260 a month; most in Ratodero survive on far less.) He spoke to a close friend and told him about his daughter’s condition. The response shocked him.
“My kid already has H.I.V.,” Shah’s friend said. Eman, it turned out, was not the first young child infected with the virus in Ratodero, where more than 300,000 people live. Shah’s friend’s son received the same diagnosis two years before. In each case, the parents tested negative for H.I.V.
In 2020, about 2.8 million people worldwide under the age of 20 were living with H.I.V.; over half of them were younger than 10, according to UNAIDS, the United Nations H.I.V. program. In a vast majority of these cases, the infection was acquired through vertical transmission, meaning an H.I.V.-positive mother passed the virus to her child during pregnancy or delivery or while breastfeeding. It was unusual that these two children in Ratodero had H.I.V. when their parents did not. Nor did either child have a chronic disease that would require rounds of blood transfusions or routine kidney dialysis, which could possibly expose them to blood-borne illnesses. The two previous major outbreaks in the area — one among drug users who used needles and another among patients at a contaminated dialysis center — involved higher-risk populations.
After Eman’s diagnosis, Arbani began testing many more of the sick children he saw for H.I.V. Within a matter of months, he had identified 14 pediatric patients with H.I.V. All of them were younger than 10.
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Credit...Sarah Caron for The New York Times
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Credit...Sarah Caron for The New York Times
The big three infectious diseases that plague the world — H.I.V., tuberculosis and malaria — cause more than 2.3 million deaths a year, disproportionately in poorer countries. Until the coronavirus pandemic, though, the overall trend with these diseases was a cause for optimism. Two-thirds of the world’s 38 million H.I.V. patients are now getting treatment, and their expected life spans have been lengthening significantly in recent years, as doctors have increasingly figured out how to forestall acquired immunodeficiency syndrome, or late-stage H.I.V. At the same time, infection rates have been in decline, thanks to advocacy, well-directed funding and smart public-health efforts: New H.I.V. infections have been reduced by nearly a quarter since 2010.
Remarkable advances have been made against malaria too over the last two decades. Deaths caused by the disease have dropped by 44 percent. In 2019, the first malaria vaccine was distributed in sub-Saharan Africa. This is also the region of the world where the largest gains have been made against H.I.V. And while the global campaign against tuberculosis has had less success — in large part because of the emergence of multiple-drug-resistant strains of the bacterium responsible for the disease — progress has nevertheless been steady, with a drop in deaths of nearly 15 percent over the last five years.
Now another virus has been threatening to undo this progress. Over the course of barely a year, the coronavirus has infected more than 120 million people worldwide, directly claiming the lives of more than 2.7 million. Coronavirus infections have disrupted medical services, scrambled drug-supply chains and necessitated the redeployment of public-health staff. According to the Global Fund, an international organization that finances health initiatives, about 75 percent of H.I.V. programs have already been moderately or severely disrupted.
This has dire implications: UNAIDS estimates that even a six-month interruption of antiretroviral therapy for 20 percent of people would result in more than 110,000 additional deaths. In a September study in The Lancet Global Health, researchers modeled the impact of Covid-19 on H.I.V., tuberculosis and malaria. Over the next five years, in low- and middle-income countries where these diseases are highly prevalent, deaths could increase up to 10 percent for H.I.V., 20 percent for tuberculosis and 36 percent for malaria.
For these reasons, Mishal Khan, a policy analyst at the London School of Hygiene and Tropical Medicine who studies Pakistan’s health system, says she doesn’t want “everything to be about Covid, because it’s not like the other issues will go away.” They’ll just “get neglected,” she adds, because even infectious diseases that have been “taking lives for decades” haven’t been tracked as closely as Covid-19. The diversion of resources from H.I.V. and other health conditions to the pandemic inevitably affects the most vulnerable. As António Guterres, the U.N. secretary general, warns in a UNAIDS Global Report, H.I.V. and Covid-19 have each exposed “our world’s fragilities — including persistent economic and social inequalities and woefully inadequate investments in public health.”
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In Pakistan, H.I.V. numbers have long been trending in the wrong direction. The most recent data indicate that only 21 percent of those infected with H.I.V. in Pakistan are aware of their status. According to UNAIDS, there are an estimated 190,000 H.I.V.-positive people in the country, and only 12 percent of them receive treatment. As a result, there has been a 385 percent increase in H.I.V.-related deaths in Pakistan since 2010. Sub-Saharan Africa, in contrast, has had a 45 percent decline over that same period. Pakistan has one of the fastest-rising rates of infection in Asia and the Pacific.
Why has there been a resurgence of H.I.V. in Pakistan even as it has declined elsewhere? Much of the reason is money — specifically, the lack of consistent and equitable government spending on health. According to the World Bank, just over 3 percent of the country’s gross domestic product goes toward health, one of the lowest such allocations in the world; its neighbor Afghanistan devotes nearly 10 percent. Per person, less than $45 is spent on health care annually in Pakistan, which relies heavily on foreign aid; in the United States, which has the highest per capita health care expenditures in the world, the amount is around $10,600. Life expectancy for the average Pakistani is 67 years, more than a decade shorter than it is for Americans. Pakistan, one of two countries that has not eradicated polio, also currently bears some of the heaviest burden from tuberculosis, at least in part because being H.I.V.-positive increases the risk, by roughly 20-fold, of developing the disease.
Yet many poorer countries manage to have better health outcomes than Pakistan by focusing on primary care and strengthening their public-health capacities. Allocating resources strategically and prioritizing hard-to-reach areas and marginalized groups can help ensure that access to services is not determined by geography or income. Active disease surveillance and prevention can blunt outbreaks, or at least stop health systems from becoming apathetic and dysfunctional when crises surface.
The vexing failure that can follow from neglecting to take these steps is nowhere more visible than it is in Ratodero. As of Nov. 30, an astonishing 1,132 children in the city and its environs were H.I.V.-positive, most of them under age 13. To put this in perspective, the equivalent figure for the entire United States is less than 2,000; the American population, 330 million, is a thousand times that of the Ratodero metropolitan area. (An additional 408 adults have also tested positive for the virus there.) The numbers in Ratodero are certainly higher now. Imran Arbani and local journalists compiled a list of children who have died from H.I.V. since the outbreak began; 48 is their current tally.
As the end of the pandemic seems to be coming into sight, the riddle of H.I.V. in Pakistan is a crucial one to unravel in order to understand how to resume progress on global health in the post-Covid era. The previous headway made against some of the world’s deadliest infectious diseases isn’t guaranteed to continue. Even in favorable socioeconomic conditions, drugs and programs can’t make up for a weak health care infrastructure. The pandemic has strained, if not wrecked, many countries’ health systems and left many people poor and vulnerable — a reality that Ratodero has long been reckoning with.
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Credit...Sarah Caron for The New York Times
Shah and his family arrived in Karachi in March 2019, after a seven-hour, overnight trip, and took Eman to Civil Hospital, the only public hospital in the city with a pediatric H.I.V. treatment center. By then, Shah says, Eman’s struggles to breathe had worsened. He thought she would be admitted to the hospital immediately. Instead, they were told she wasn’t sick enough and were sent away.
On the day I visited, last March, the hospital was chaotic and overcrowded, with patients waiting outside in amorphous lines. I saw several patients — one with a broken femur, others who looked profoundly dehydrated — in makeshift cloth stretchers propped up with sticks hoisted by family members. They, like the patients who were able to stand, waited hours to be tended to.
The hospital’s pediatric H.I.V. treatment center is tucked in the back, in a concrete building. Iqbal Soomro, the doctor who has been running the center for more than a decade, didn’t remember the particulars of Eman’s case. But he showed me her chart, where he had checked the box “unknown” to indicate how she had been infected. Each month, he and his staff compiled these cases and sent them to the Sindh AIDS Control Program (S.A.C.P.), also in Karachi. (Karachi, Pakistan’s most populous city, is the capital of Sindh Province, which also includes Ratodero and Larkana.) “It is my duty to give report,” he told me. “After that, I don’t know.”
For five days, Shah returned to the hospital every morning with Eman. They were turned away every time, he says, and Eman got sicker. Finally, on the sixth day, she was admitted to the hospital. She was put on oxygen, but she was not treated with any antiretroviral medicines, according to Shah, who grew increasingly concerned and called Arbani. The doctor told him that his daughter should have already started taking H.I.V. medicine. Shah questioned the hospital doctors but, he recalls, was met with resentment. In Pakistan, patients have little power. “Patients are intimidated, and doctors exploit it to the fullest,” Arshad Altaf, a Karachi-based public-health and injection-safety expert who has worked for the World Health Organization, told me. “If a patient questions the doctor, she or he will snap back with a reply like, ‘I know better than you’ or ‘Am I the doctor or you?’ and this largely keeps the patients quiet.”
Desperate, Shah discreetly sought out a hospital pharmacist to see if there was another way for him to get antiretroviral medications for his daughter. The pharmacist suggested that he get another opinion, at Aga Khan University Hospital, the private academic medical center across town. There, patients pay out of pocket for every consultation and hospitalization; the cost of such top-level private medical care is prohibitive for many Pakistanis who need it. Only the H.I.V. medications themselves are free, largely financed by international organizations.
Shah borrowed some money and took Eman to Aga Khan. On the day that she was admitted into the intensive-care unit, she was started on antiretrovirals. Her CD4 count, which measures the strength of the immune system, had fallen to 90, an often fatally low number.
Back in Ratodero, Arbani began to worry. He had been referring cases to the H.I.V. centers at the hospitals in Larkana and Karachi and anticipated that they would prompt an investigation. But weeks passed without any word from public-health officials. When he finally received a call related to the outbreak, in the third week of April, it wasn’t from someone in the government. A reporter in Karachi named Yousif Jokhio was calling: A relative had connected them, and he told Arbani that his cousin’s child, who lived in Ratodero, had died of H.I.V. earlier that day. “I was shocked,” Jokhio says. “How is it possible that a 2-month-old is H.I.V.-positive when his parents are negative?”
Arbani was relieved to hear that somebody was finally asking questions. He had kept careful records for the previous two months, and now he shared many of his files willingly. At noon on April 24, two days later, Jokhio’s station broke the full story about the cluster of H.I.V.-positive children in Ratodero. About an hour later, another TV station did the same. Its reporter, Gulbahar Shaikh, who was from Ratodero, says he began investigating after seeing a Facebook post by Nazeer Shah. After the two televised accounts, word of the outbreak quickly spread across the region and soon the country.
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Credit...Sarah Caron for The New York Times
The Sindh AIDS Control Program should have been actively engaged in disease surveillance, which would have caused it to investigate the early cases in Ratodero, but the program — and the rest of the government — seemed to learn about the outbreak at the same time the world did, from news reports. Altaf Soomro (no relation to Iqbal), who directs efforts to teach the community about H.I.V. for a nonprofit called Bridge, had worked for the Sindh AIDS Control Program; he is now critical of it. “S.A.C.P. is the main program who is responsible for covering all these things” related to the H.I.V. outbreak in Ratodero, he told me. “If they had worked effectively, no such outbreak would’ve happened.” (In July, after government restructuring, the program was absorbed by the Sindh health department.)
The negative media attention generated intense public pressure on provincial health officials to act. The W.H.O. pronounced the situation in Ratodero an emergency. As television crews descended on the area, the government prepared to rapidly deploy doctors and epidemiologists to the area. H.I.V. doctors in the public hospitals went to Arbani’s clinic and demanded to know why he had gone to the news media first. A pathologist who handled positive tests told me that he was pressured by government officials to play down the number of them; he refused and left his position.
Some government doctors confronted Arbani on the grounds that he had violated patients’ privacy when he gave their names to journalists. While the TV broadcast did not show any photos or identify any patients, Arbani had handed over a list of names to Jokhio. As a longtime journalist reporting on the government, Jokhio viewed this as necessary to ensure accountability. “Without them, the government would bury everything,” Jokhio told me. “Sometimes you have to inflict injury to get to the cure.” (Subsequent local news reports did reveal the names and faces of patients and their families.) In my time there, many parents were eager to have their stories made public, bringing out medical records and sharing their experiences with me. Others followed me to ask why I hadn’t inquired about their infected children.
Within a week after the news broke on TV, the provincial government sent a group of experts to Ratodero to respond to the outbreak. Many of the infected children had visited a physician named Muzaffar Ghanghro, an inexpensive doctor in town with a practice focused on children. Ghanghro was forced to be tested for H.I.V. When the results reportedly indicated that he had the virus — possibly contracted from two blood transfusions he received after a car accident, according to local doctors — some health officials publicly rejoiced; they were relieved to have found what seemed to be the culprit, eager to imply that his positive test result somehow meant that he was intentionally infecting children with H.I.V. (Ghanghro denies that he is H.I.V.-positive.) The news of his H.I.V. status was immediately televised. The police arrested him, and Ghanghro was branded the sole cause of the outbreak. “To settle down the pressure, the government had to do something to show they’re holding someone responsible,” a representative from UNICEF, the U.N. agency for children’s affairs and emergencies, told me. As news of the arrest circulated, families of infected children made public accusations against Ghanghro.
Out of caution, Gulbahar Shaikh, the local TV reporter, decided to have his children tested too. He was shocked when the results came back positive for one of them, his 1-year-old daughter Rida. She was sent to the government hospital in Larkana to get a chest X-ray to screen her for tuberculosis; she waited two days for the X-ray. Then someone at the hospital told Shaikh that there was no pediatric H.I.V. treatment there. He sold his wife’s jewelry to pay for Rida’s medical care in Karachi. “If they are doing this to me,” Shaikh told me, “how will it be for the common person?”
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A health system under strain collapses when it’s stressed. Not everyone feels it when it gives way. But it almost always throws into free fall the most defenseless first: children, the poor, the uneducated, the marginalized. The failure to prevent an outbreak — and to recognize and control one after it starts — is acutely diagnostic of the broader chronic problems afflicting a country’s health system, fluorescing its deepest injustices.
Fatima Mir, who runs the pediatric H.I.V. clinic at Aga Khan University Hospital in Karachi, was one of the doctors who went to Ratodero to help with the emergency response there. In March, about a week before the coronavirus was declared a pandemic and as Covid-19 was beginning to surge across my home, New York, I visited her at Aga Khan. It’s a breathtakingly beautiful place: Lush palm trees surround its courtyards, and ivy climbs up its buildings, which have marble floors and teak ceilings. Valet-parking staff members greet visitors. The hospital is a calm oasis in a hectic city.
Mir, a short woman who is warm and effusive — but stern when she needs to be, punctuating her convictions with curse words — led me to her office, where she has a poster of a woman in a superhero outfit, captioned “Ms. Dangerous.” The most basic requirements for a center were absent when she got to Ratodero in May 2019: That first morning, she explained, she didn’t even have a chair to sit on. She went to the store to buy notebooks to make rudimentary prescription pads. She weighed the children herself. A colleague began seeing children in an open-air tent, while Mir borrowed two rooms in an adult clinic to treat patients, amid a crowd of desperate parents. “I washed my hands in the morning in my hotel, and I washed them at night when I came back,” she said. “I did not wash my hands even once between the 80 patients” she saw each day, because no soap or clean water was available. Reporters roamed freely, listening in on people’s conversations, taking note of which families had children who tested positive. It was bedlam. “We were hit by an atom bomb,” she said.
Mir was tasked with training public-health doctors from the polio-vaccine program to become pediatric H.I.V. specialists in two weeks. She was shocked at how little clinical experience they had. “They were not very used to even touching patients,” she recalled. Trying to teach them how to examine a patient with H.I.V., to look for specific physical findings, “was a disaster.” They were the equivalent of first-day graduates from medical school. So she simplified everything as much as she could. For instance, she told them not to treat tuberculosis at the same time as H.I.V. because the two medication regimens could get too complicated. After three months, a formal pediatric H.I.V. treatment center finally opened in Ratodero, housed in the public hospital. It was staffed by Mir’s trainees, supported with emergency funding from international agencies.
Arbani continued to be the eyes and ears of the community, searching for cases to refer to the new facility. He was convinced that some of the negative test results for the children he was seeing were false. His clinical instincts told him that these children had too many symptoms consistent with H.I.V. — weight loss, persistent coughs and diarrhea — and where there was one case of horizontal transmission, there were likely to be more. He also had a hunch that the public labs weren’t as accurate in their testing as the private ones, so he sent patients to Aga Khan’s satellite labs in Larkana for confirmation, as he had done with Shah back in February.
Arbani has turned out to be right. Since Eman’s H.I.V. diagnosis, he has identified a dozen cases of conflicting results — that is, the parents were told their children didn’t have H.I.V. when, in fact, they did. For some of them, this significantly delayed treatment and might have led to preventable deaths.
Perhaps spurred by all the media attention, Pakistan’s national Ministry of Health sent an international team, with support from Aga Khan University, U.N. agencies, the W.H.O. and the Centers for Disease Control and Prevention in the United States, to Ratodero to thoroughly examine the outbreak. They uncovered a multitude of unsafe medical practices in the area, similar to what Mir discovered. Based on interviews with hundreds of parents, almost every child who tested positive had also received an injection of some kind in the previous year. What’s more, H.I.V.-positive children had had roughly three times the number of injections compared with their virus-free peers. Investigators found that needles and intravenous lines were being reused, despite a 2011 law mandating the production and stockpiling of single-use disposable syringes.
Pakistan has among the highest number of unsafe injections in the world, according to several international studies. This grim ranking is in part an inevitable byproduct of a fragile health system, but the reasons are complex and interrelated, driven as much by socioeconomic factors and long-held cultural beliefs as by a lack of government investment and oversight. The standards for preventing and controlling infection are not adequately taught or enforced in undergraduate medical education in Pakistan; in one survey, over 80 percent of medical students responded that they needed better training. As a result, hand-washing, the use of disposable syringes and the proper discarding of needles and sharp instruments aren’t always practiced by medical providers. Because the oversight of medical education in Pakistan isn’t very strict, the recent proliferation of private medical schools is troublesome. These institutions set their own admission and graduation standards and can be highly variable. Exact numbers are unclear, but it seems there are at least 70 medical colleges registered, with possibly an additional 50 or so that are not yet registered or are operating under the radar, according to Mishal Khan, the London School professor. What’s more, Khan says, requiring continuing medical education to learn, say, the latest standards for infection control or how to diagnose new diseases is not customary in Pakistan. And unfortunately, in places as poor as Ratodero, health providers may resort to reusing medical equipment to cut costs.
The shortcomings aren’t limited to allopathic medicine. Many Pakistanis seek care from homeopathic providers and chiropractors. Pharmacists and technicians also practice in ways they’re not qualified for, as do others who have no training whatsoever (all of whom the Pakistan authorities call “quacks”). The regulatory oversight of these alternative health care providers is uneven, at best. Though they are not licensed to do so, some give patients shots and intravenous medications.
A study in 2014 found that over 70 percent of health care services in Pakistan are provided by the private sector; this may be, in large part, because public facilities often close their doors at 2 p.m. In fact, many of these government-employed doctors go from their jobs in the morning to their own private clinics in the afternoons. As a whole, government-run facilities also do not serve poor, illiterate patients very well. To attract and retain their patients, private doctors and quacks alike have incentives to provide injections even if they’re superfluous, because patients might otherwise think they haven’t been treated effectively. As such, Pakistan has one of the highest injection rates in the world, with research showing that people get at least five to eight shots a year, while some studies conclude that the number is closer to 14. Nearly 95 percent of these, according to the national government, are considered medically unnecessary. Unlicensed blood banks are also known to inadequately screen blood. Poor parents may forgo their own health care, but they’re still inclined to take their children to the clinic, no matter how limited their funds.
The problem is pervasive. “Except for a handful of health care facilities in the country, there is hardly any concept of infection prevention and control,” Arshad Altaf, the public-health expert, told me. As a result, Pakistan bears the second-highest global prevalence of hepatitis C, another blood-borne pathogen. In Ratodero’s district, the Sindh HealthCare Commission has been made responsible for finding and shutting down facilities that aren’t properly licensed or don’t adhere to standards of care. The commission was created in 2017, though it didn’t actually start operating until 2018 because of insufficient funding. When the H.I.V. outbreak in Ratodero became widely known, the commission went around and closed noncompliant and illegitimate facilities around the area. In total, it put more than 300 practices out of business, including several blood banks. It also detected black markets selling reused needles. “We diverted all our forces to respond to the Ratodero incident,” Minhaj Qidwai, at the time the chief executive of the Sindh HealthCare Commission, told me. By December 2019, health officials thought that the source of the H.I.V. outbreak was well controlled.
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Credit...Sarah Caron for The New York Times
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Credit...Sarah Caron for The New York Times
Private clinics are scattered among the shops and food stalls on nearly every block in Ratodero, their homogeneous fronts no different from those of the commercial stores. When I visited the area in February last year, it had been two months since unlicensed facilities had supposedly been shut down. Walking on dusty dirt roads under an unforgiving sun, I dodged goats and donkeys and motorized rickshaws. Festive music spilled from the market stalls, accented by the merchants’ shouts. Children darted in and out of the alleyways. I visited a dozen or so clinics. Most of them had no place for hand-washing. The two barbershops I stopped into each indicated that they reused razors.
In one clinic, a tall man in an olive-green kurta with a stethoscope around his neck was examining a baby. As soon as I walked in, he put the baby down and dropped his stethoscope. Though I didn’t ask what he was doing, he was quick to let me know that he wasn’t examining the patient but was simply checking her temperature. I looked around. No thermometer was in sight. I asked him where the doctor was; he said he would be back in five minutes. When I told him I would wait outside, he told me that the doctor wouldn’t return for at least an hour. Better to make it 7 o’clock, he advised. I returned a few minutes early. A steel door was pulled down; the clinic had closed. It remained that way for the rest of the evening, even though it was supposed to stay open until 9.
Many such clinics were run by those without full medical qualifications. The man in the green kurta with the stethoscope probably had a “medical dispenser” degree, whose requirements can vary by school — they might consist of scoring at least 45 percent in one’s high school science classes and then completing a one-year course, for example. The doctors weren’t actually on site; they had lent their names to the clinics and benefited from the profits. Patients and their families didn’t know better. “Someone puts a stethoscope around the neck and sits in a room in a community, and he or she becomes a doctor,” Altaf told me.
Even those with medical degrees often didn’t follow the proper measures to avoid infections. At best, their methods were opaque. The providers regularly went behind lecterns or disappeared into separate rooms to prepare injections and IVs, making it impossible for patients and their families to see what was happening. At worst, needles and IV cannulas were openly reused. When I asked on-site providers about their operations, they told me that patients are responsible for buying their own needles and IV sets from the pharmacy. Yet there were boxes of such equipment in the facilities themselves. I saw this in practice, too: As a boy, who was around 5, got an IV drip through his left hand in one clinic, his doctor told me that his mother had bought the IV herself from the pharmacy. But when I asked her about this later when the doctor wasn’t around, she told me that he had supplied everything.
Based on what I saw, the mishandling of medical equipment seemed to be prevalent. Used needles were littered about one health facility, on filing cabinets and windowsills. Residual blood was visible in some of them. The doctor on site quickly threw several needles out the window, telling my translator in Sindhi that he didn’t want me to see them. He also informed me that he had disposed of the syringes in designated sharps bins, which are hard plastic or steel containers with locked tops. But none were visible; he told me they had been sent to the government hospital in Larkana for incineration. I didn’t see any gloves either; the doctor said he had discarded all of them. Nebulizer masks, which can be contaminated with respiratory droplets, were reused here, as in other facilities I visited.
At a government hospital in Larkana, I watched as a nurse left a needle uncapped after preparing medication in the pediatric unit. Then she tossed it, tip still exposed, into a regular wastebasket. I didn’t see any sharps containers. Outside, I asked a cleaner how the hospital deals with trash. He walked me past the hospital’s front gate and showed me the garbage lined up around its perimeter. There were exposed needles, IV cannulas and dirty nebulizer masks everywhere. An incinerator was nearby, but it wasn’t in use. (The W.H.O. has since donated new incinerators, but the pandemic delayed their installation.)
As an emergency-room doctor, I have provided medical care overseas in all sorts of ghastly environments. Still, I was shocked here. Even in impoverished, war-drained countries in sub-Saharan Africa, I was kept to the strictest of infection-control standards as a medical student. Nurses in the operating and labor and delivery rooms had eyes in the back of their heads, ready to admonish anyone who broke protocol. In an H.I.V. ward in South Africa, I was startled by the lacerating words of a fellow student, a local woman, as I clumsily handled a needle. She warned me that no matter how rushed I was, this task can’t be compromised. It’s the first lesson we learn here as students, she explained.
Syringes with built-in safety closures that easily slide forward to cover the needle are common in American health facilities, but even at Aga Khan, these aren’t available. At best, the plunger gets locked, so the syringe can’t be reused. When I went to several pharmacies, where these needles are dispensed, and asked about proper disposal, I got awful advice. One pharmacist bent the needle to 120 degrees. “This is what we do,” he told me. The sharp tip was still exposed, obviously. “In the sewer, in the street,” another pharmacist said when I asked him where to discard the needle, before tossing it out the window without looking. I watched the needle float in a puddle of open sewage. Around the corner, children skipped down the street.
At the time, Rajesh Panjwani was the Sindh HealthCare Commission’s deputy director of inspection for the Larkana area, which includes Ratodero. I managed to see him. He shared an office with Faraz Hussain, an administrator; their desks were at right angles to each other. “All the hospitals are using the safety boxes,” Panjwani assured me, referring to sharps bins. I told him that was not what I saw, but he disputed my characterization. We went back and forth until he had to take a phone call. I didn’t even know Hussain was listening, as he was typing briskly on a large desktop computer, but now he spoke up. “You are telling 100 percent truth about the government hospitals,” he said to me.
Later, Panjwani told me that he had inspected many clinics in the area and that they had safety boxes available. I said I hadn’t seen a safety box in any of the dozen or so clinics I visited. At this point, Hussain said something to Panjwani, and they began to argue in Sindhi. My translator quietly said to me, “Hussain is saying: ‘She’s telling the truth. Please admit the truth. There’s no safety boxes at the clinics.’”
Everything, it seems, is always someone else’s job. Aftab Ahmad, a doctor who was in charge of monitoring and evaluation at the Sindh AIDS Control Program, blamed the district health office for the outbreak. “There is some denial, you are right,” Ahmad said. “People are not completely doing what they ought to do.” As for the Sindh HealthCare Commission, while it can order a clinic to be sealed, it looks to the police to enforce the order. The commission considers its job done when it has made its recommendation to close clinics with violations; the commission doesn’t consider itself responsible for actually shutting the facilities down or making sure they stay closed.
The cruel dilemma, though, is that without these private health spaces, many people in Ratodero and other remote areas in Pakistan wouldn’t have access to any health care. For the poor and uneducated, the choice is usually between terrible care or no care at all.
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Credit...Sarah Caron for The New York Times
Uzma Sheikh had just begun to babble “aba” — “dad” in Sindhi — at her father, Nisar Sheikh, when she fell ill in the summer of 2019. Though they didn’t have money to pay for the visit, Uzma’s parents took her to Arbani’s office one August evening that year. He saw her free of charge, then sent her to get an H.I.V. test at a laboratory because the new treatment center in Ratodero was closed. The result came back positive. At the center the next morning, the test was repeated and was negative. Arbani didn’t believe the result; Uzma looked very ill and had all the telltale signs the other children had. He gave $10 to her father to take her to the Aga Khan lab; that test, once again, came back positive.
Uzma’s parents then took her back to the treatment center, but because its own test had been negative, the doctors refused to treat her. “We’re illiterate people,” Sheikh said. “We don’t know how to talk to people at the hospital.” They returned home. Less than a week later, Uzma died.
Inside a dark, mud-floored hut held up by crumbling bricks and a thatched roof, I sat on a straw cot surrounded by chickens. A small open fire on the ground heated up a pot, from which thick, throat-burning smoke poured out. Uzma’s parents rummaged about their one-room home, pulling out photos of their daughter. The girl had enormous eyes and ears that stuck out.
Sheikh wanted to show me her grave. He led me across dirt fields, making turns at unmarked spots until we came upon a small hill, a mound of dirt with a line of gray stones on top in the shape of a child-size coffin. He gazed to the horizon, his face defiant. “We’re angry at times,” he said. “But life just goes on.”
Around the time of Uzma’s diagnosis, another girl, Saba Junejo, also tested positive for H.I.V. She, too, was unable to get medications from the treatment center, though for different reasons. I visited her home, which was in one of the villages surrounding Ratodero, far from the city; we drove past water buffalo herds, grass fields and a river, making three wrong turns before arriving. An extended family of six adults and 10 children lived in the two-room home, which had only one tiny window. A lone light bulb flickered weakly.
Saba’s parents told me they were informed by staff members at Ratodero’s treatment center that it was out of medications and that they should come back in a month. Back home, Saba continued to spike high fevers and stopped eating. For the next several days, the family tried to borrow enough money to pay for transportation to take the girl to Larkana. But on the third day, Saba stopped breathing.
When I was there, her 3-year-old brother was asking every day, “Where is my sister?” The family has run out of money. As farmers, they would have put their savings toward next year’s harvest, but they paid for Saba’s medical expenses instead. For now, they are without income. Saba’s mother, Safiyah, has one pair of gold earrings, which she tried to use to get a loan. “If Saba had lived, she might be walking today,” Safiyah said, shaking her head.
Zahid Meerani, a shopkeeper, knows her grief all too well. He called out to me when he saw me going around the market — he wanted to make sure I publicized his family’s suffering. “My boy was the first to die from this outbreak,” he told me. His son was 2. “I want to say to the government: ‘My boy is dead. Please save the other kids.’”
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Credit...Sarah Caron for The New York Times
In many ways, the public-health system in Ratodero is like public-health systems everywhere: Its workers are understaffed, underpaid, disillusioned. The work is tedious, and the reward for success can be invisible. After all, the public doesn’t realize when disease is prevented; it only knows when it’s not. Governments need to keep an accurate count of cases, track where and how a virus is circulating and coordinate a response to choke its spread — or at least slow it down. Even the most heroic efforts by individual doctors and nurses aren’t substitutes for government leadership and public-health action. When they’re inadequate, preventable outbreaks erupt, the difficult-to-control turns impossible. Diseases unfurl. People die.
It’s easy to blame one person, but an entire system has to fail for this number of children to contract H.I.V. Muzaffar Ghanghro, the pediatrician, spent nearly two months in jail before the charges of doing intentional harm to his patients were dropped, though it’s quite likely that he, as many medical providers do, reused supplies and didn’t strictly adhere to sanitation practices. Some public-health officials have since acknowledged that the doctor was scapegoated. “Someone has to blame someone,” the district health officer said.
When I called Ghanghro, he said he was in Karachi, though I soon found him outside his home, not far from the center of Ratodero. He told me he didn’t want to talk, yet he was also determined to clear his name. He was agitated, his speech frenzied, perspiration collecting on his forehead. “They created a whole story just to blame me,” Ghanghro said. “All of the government wanted to transfer responsibility to one person because people needed an answer, so they just accused me.” In fact, he said, some families blamed him for their children’s infections, even if he never cared for them. He maintains that he has not done anything wrong and adamantly denies his H.I.V. diagnosis. But he also asked rhetorically, “Even if a doctor has the disease, won’t he still be allowed to practice?”
Sikander Memon was the head of the Sindh AIDS Control Program during my trip to Pakistan. Memon, a short, balding man with a very thick beard, was initially suspicious of me. To try to put him at ease, I told him that I was aware that it could be difficult to work in a place like Ratodero. “This time is not that time,” he replied. He was clearly upset that I had visited the area without telling him first. “Without seeking permission of mine, you were there yesterday,” he said. “I’m not informed by anybody that you’re going to Larkana, and I would not allow anybody permission to give you information about H.I.V. If you got information, I will punish them.”
Those on the ground acknowledge that there was a shortage of medicines, particularly early on, but Memon denied that. “There was not a single day that a patient came to our center and did not get medicine,” he insisted. I mentioned a three-month gap when patients could not be tested for their H.I.V. viral load. “A gap of three months is not a big deal,” Memon replied. At one point, exhausted by my questions, Memon cut me off. “Look, this is not our responsibility to keep alive all the people by giving them medicines,” he said. “It’s up to Allah.”
Toward the end of our meeting, Memon received an urgent call. He was being moved to the coronavirus program. Pakistan’s first case had been detected in Karachi the day before. He was done with H.I.V. As we walked out together, Memon seemed relieved to be moved to another disease unit and recommended that I talk with Azra Pechuho, the Sindh minister of health and population welfare.
Wearing a peach flower-embroidered silk sari, Pechuho greeted me from behind a wide desk in front of lofty windows; her office was spacious, with plush cerulean velvet couches framing an elegant sitting area. She immediately started listing her staff’s accomplishments and their upcoming initiatives. Eventually, the discussion circled to the pediatric H.I.V. outbreak in Ratodero. When I asked about Zahid Meerani’s deceased son and other victims, Pechuho denied that their deaths were related to H.I.V. When I challenged her, questioning why their cases weren’t investigated after they sought care for H.I.V. in government hospitals, Pechuho countered in anger and, her voice rising, blamed the lab in Ratodero for the media revelations. A suited man had slipped in during our meeting and was sitting on one of the couches. Pechuho shouted at him to grab files from the government hospitals. He looked confused and didn’t know what to do next. Pechuho then banged on her desk with her fist. She ordered her assistant to escort me out immediately.
Last June, accounts in the Pakistan news media noted, the government stopped putting out reports about test results — until it finally released one on Nov. 30, the eve of World AIDS Day. Case counts have not been updated since then. A majority of residents in the Ratodero area have yet to be screened.
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Credit...Sarah Caron for The New York Times
The family of Imtiaz Jalbani, a laborer, has suffered as much as any from this outbreak. At its onset, he had five children. He lost two of them to H.I.V., and two more are H.I.V.-positive; both he and his wife, Zulekhan, are negative. When I saw them in Ratodero, she had just given birth to a girl, who, fortunately, remains uninfected. Jalbani also has a 2-year-old nephew with H.I.V., whom he now considers his son, after he moved in with them — he told me the boy’s parents preferred that he be kept separate from their other children. Jalbani worries endlessly about his three H.I.V.-positive children. “My kids are like the living dead,” he told me. “We don’t believe in anything in the world now.” He sighed, then said: “I hope I will see grandchildren, but I don’t have much hope. They will suffer; they’re on medications for life.”
Ali, his oldest son, who is H.I.V.-positive and now 7, was recovering from a respiratory illness. He jumped in when he heard his father talking about medicines. “I eat tablets, and I don’t know why,” he said, his words trailing off into a coughing fit. Every day, he said, Ali took two H.I.V. tablets in the morning and two in the evening, as well as a syrup. He also ingested iron pills because of frequent diarrhea, possibly caused by the lack of clean water. In richer countries, children’s foods, like cereal, are often fortified with vitamins and minerals, which would cut down on this daily medication regimen. The ready availability of refrigeration would also allow some of their pills to be replaced by easy-to-swallow formulas.
“It’s criminal,” says Fatima Mir, from the pediatric H.I.V. clinic at Aga Khan hospital. “But because people are not very aware of what has been done to them, now their child will live with a chronic condition all their lives. No matter that what we know about life expectancy on ARVs and viral suppression is good, but it could’ve been a life in which they didn’t need to take ARVs every day and constantly go to the doctor for every diarrhea, every respiratory illness.”
It’s not only the children’s physical health that worries parents but their mental and social needs, too. Jalbani had to move his family to another village because they were shunned by relatives and neighbors. Their life now is isolating, their home a tiny space encased by mud, with a few water buffalo and goats that were on loan but have since had to be returned. “It’s not just H.I.V. that’s killing us,” Jalbani said. “It’s the stigma that also kills us.”
Gulbahar Shaikh, the reporter, expresses similar sentiments about his daughter. “I’m still worried about her future,” he told me. “She’s not to blame for her H.I.V. What will happen to her when she grows old and asks what was her fault in all this, getting H.I.V.? What will I reply to her?” The government had supposedly established a $6.4 million fund for the children and their families. Despite promises that they would receive the money in the spring of last year, it has yet to be distributed. In July, Ratodero’s treatment center temporarily ran out of medications, its supply of drugs having ostensibly been interrupted by the pandemic. Since then, there have been other disruptions, including, at times, patchy staffing and intermittent unavailability of H.I.V. tests.
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Credit...Sarah Caron for The New York Time
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Credit...Sarah Caron for The New York Times
As more children continue to receive H.I.V. diagnoses in Ratodero, their odds of living to adulthood are running against them. After her time there, Mir has reckoned just how high. “I would be happy if at the end of 10 years,” she told me, “half of them survive.”
What Mir speaks to are the merciless conditions of poverty and the decades of neglect, which no medicine can overcome. In August, Farhan, a 5-year-old boy, was found to have H.I.V. He also tested positive for tuberculosis, for which treatment was started right away. The doctor then prescribed antiretrovirals. Farhan took them every day. Still, he became very ill. In February, he was unable to breathe and had chills so severe that his father, Abdul Razaq, a farmer, thought he was having seizures. Razaq took him to a hospital in Larkana, where, after a couple of hours, the boy died.
Arbani, like Mir, is not surprised. In Ratodero, he says, “there is no single month where there’s no death” from H.I.V.
Eman Shah, though, eventually got better after the intensive care she received at Aga Khan. Today she is mostly healthy. “Life will never be normal again,” her father said, “but at least now life is routine.” Shah still takes her on seven-hour journeys to Karachi to get treatment at Aga Khan. He doesn’t have faith in the government facilities. When I met Eman, a little over a year ago, she was 2, and her hair was trimmed into a pixie cut, her dark, round eyes framed by long, glossy eyelashes that grazed her chubby cheeks. She was quiet but deeply curious. Shah fondly called her Emo as she toddled alongside him. He knew that he was fortunate to be one of the few in Ratodero with an education and some financial stability. When the pandemic disrupted Eman’s appointments, his relative in Karachi was able to pick up a three-month supply of H.I.V. medications for her.
Recently, Shah was on the bus with Eman, on one of their trips to Aga Khan, when he texted me about the coronavirus’s devastation on the world. He fully grasped the magnitude of the human losses, the universal suffering. Yet, at last, he wrote, “We lost much and more in H.I.V.”
Helen Ouyang is a physician, a writer and an assistant professor at Columbia University Medical Center whose writing has been a finalist for the National Magazine Award. Sarah Caron is a photographer based in Pakistan and Paris. She has published five books of photography, including “Le Pakistan à Vif.”
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