Table of Contents
Behind the Scenes: Zimbabwe & South Africa
Prep and Prevention: South Africa & Malawi
Young with HIV: Malawi
Ukraine’s Silent Crisis
Cuba’s Christian Dior
Out of Sight: India
Is Empathy Enough? Philippines
Ana P. Santos
To End AIDS considers the social, economic, and political aspects of the battle against AIDS. It highlights the complications that characterize an era of ending transmission and supporting populations at risk. And while this e-book fills in historical gaps in the virological discovery, it also urges those on the frontlines to think about more than just “what’s in the petri dish.”
Reporting in this e-book takes us from Cuba to India, and from Ukraine to South Africa. Stories by Pulitzer Center grantees were first published in The Atlantic, The Los Angeles Times, Science, Scientific American, Nature, PBS News Hour, Global Health NOW, PRI’s The World, and other outlets.
The contributors to this e-book all attended the 21st International AIDS Conference—a gathering in July 2016 of over 15,000 in Durban, South Africa, where academics, advocates, and even key affected populations came together to show that the spirit of the AIDS community is as alive as ever. Yet the meeting took place in the midst of a sobering season in AIDS progress: an era of terrorism so hostile that it breeds cultures of isolationism, thus threatening the fought-for consensus in the fight against AIDS.
This is an era in which global HIV infection rates have leveled off—rather than fallen—for the past five years. And perhaps most disheartening, it is an era in which AIDS funding has decreased by one billion dollars in just one year—a decrease that drew hardly any visibility and triggered no political alarms or plans for reversing the trend. Once on the brink of ending AIDS, we have entered a period in which the virus is offering a stern warning to the human host: the consequences of complacency are great.
Pulitzer Center grantees are echoing its warning. Jon Cohen tailors his decades of expertise to explain a nuanced issue in the movement to end AIDS: supply chain management of antiretroviral therapies, from pharmaceutical companies through patient adherence.
Amy Maxmen and Jennifer Stephens write on a particularly affected population: young women and girls. Maxmen writes from South Africa, where scientists are aiming to break a cycle of infections by providing HIV drugs for young women before they even contract the virus. Stephens, meanwhile, focuses on girls in Malawi who contracted the virus at birth. Many of them learn of their positive HIV status during their teen years but have been living with it all along.
Misha Friedman’s work epitomizes slow and in-depth reporting: he has returned to South Africa to interview and photograph HIV-infected subjects he first photographed three years ago. His project resonates by contrasting the modern trend of snippet interviewing and speedy journalism; in doing so, it reminds us that HIV-affected populations are living—and dying—beyond our publication dates.
Rebecca Sananes took advantage of the newly opened borders of Cuba to report on the country’s HIV sanitariums—a controversial method of institutionalized quarantine. She considers perspectives of both the critics, who think of it as prison, and the supporters, who praise it as a major success against the would-have-been AIDS epidemic in Cuba.
Aditi Kantipuly reports on cytomegalovirus retinitis (CMVR), a condition that epitomizes the comorbidities of HIV infection. Her reporting on the burden of blindness paints a picture of the way opportunistic infections take advantage of a decreased immune system to kick key affected populations while they’re down.
Born in the Philippines and raised San Francisco, Ana Santos has been exposed to two cultures -- one where Catholicism permeates public policy and another where the principles of LGBT rights was born. In her work, Ana Santos masterfully highlights the way conservative policy and stigma reinforce one another, leading to dangerous health trends for HIV at-risk populations in her home country.
The PBS Newshour broadcast series you’ll see dispersed throughout the e-book establishes an important new precedent: bringing together the narratives of developed and developing countries’ fight against AIDS. Before this series, too few platforms in media, research, policy, and advocacy explored the infection on both domestic/national and international levels. The NewsHour series invests in the portrayal of the HIV/AIDS fight in six very different places around the world. By viewing them together, the audience is invited to draw appropriate comparisons.
Indeed, To End AIDS contains stories of particular impact because journalists were able to spend time immersing themselves in the reporting experience, rather than generating fast, daily news. As a result, each of the projects illuminates previously under-covered areas of HIV/AIDS reporting and aims to help us think critically about just what it will take to end AIDS.
Emily Baumgaertner, October 2016
HIV Prevalence Rates Around the World
“Access Equity Rights Now,” the theme of the 21st International AIDS Conference, held in Durban, South Africa, in July 2016, reflected the current nature of the fight against AIDS. Since the conference was last held in Durban, in 2000, dramatic progress has been made in knowledge and treatment of AIDS. But stigma and larger social issues continue to restrict at-risk groups’ access to care.
This problem was the focus of “The End of AIDS?”—a PBS NewsHour series released to coincide with the International AIDS Conference. Pulitzer Center Grantees William Brangham, Jason Kane, and Jon Cohen explored how social and economic factors are shaping the global struggle to end the epidemic. One of the leaders in this effort, the Elton John AIDS Foundation, praised the series “for taking a serious, thoughtful, and incisive look at what will be required to end AIDS across the globe, including the unique challenges for different populations and geographic locations.”
The episodes from PBS NewsHour, interspersed throughout this ebook, complement our grantees’ written and visual reporting on the topic and add new perspectives on the struggle to end AIDS.
Diane Havlir: SEARCHing for the End of AIDS
A profile of Diane Havlir and her work in ending the HIV/AIDS epidemic, from co-founding the much-admired Getting to Zero campaign in San Francisco to her Sustainable East African Research on Community Health (SEARCH) study in a fishing village in Kenya. Both efforts include the three pillars that are central to stopping the epidemic—preventing HIV infection with PrEP, testing, treating people immediately upon diagnosis of HIV, and retaining people in HIV care.
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In 1987, six years after the first reported AIDS cases, the Food and Drug Administration approved the first antiretroviral drug (ARV) that, when taken with other drugs as part of an antiretroviral therapy (ART), could suppress HIV in patients’ bodies. Since the late 1980s, dozens of ARTs have been developed, helping turn the tide in the fight against AIDS. By the early 2010s, the life spans of HIV-positive individuals were approaching those of their uninfected counterparts, and health authorities had defined HIV/AIDS as a chronic disease, one that could be survived with a strict, ongoing ART regimen.
Making further progress against AIDS will require getting these medications to those with the virus and those most at risk of contracting it. In the following two articles, Science Magazine staff writer Jon Cohen looks at how Zimbabwe and South Africa, countries with two of the highest HIV infection rates in the world, are bringing ARTs to their citizens.
Both countries are delivering ARTs to more remote villages and at-risk groups than ever before. But once these lifesaving medications have been distributed, doctors and patients still face what Cohen calls “the fickle relationship humans have with taking daily medications.” The side effects of ARTs include nausea, vomiting, and depression, and many younger patients are reluctant to accept treatment for a highly stigmatized disease.
The healthcare workers Cohen met have found a variety of ways to work around this problem. Some offer incentives, like a teenage community center in Cape Town that offers internet access and surfboard rentals along with HIV tests. Others prefer threats, like an American volunteer who warns Zimbabwean villagers that, “If you default [on taking your medications], I’m not coming to your funeral.” Their experiences, and other programs Cohen encountered while reporting, suggest that further advances in the fight against AIDS will not only require scientific progress, but also stronger social connections.
Photographs from Zimbabwe are by T. J. Maposhere.
Zimbabwe: It Takes a Village
NYAMUTORA, Zimbabwe—For decades, this speck of a village was just like hundreds of others in this poor, badly governed, and HIV-ravaged country: Villagers watched as one person after another slowly withered from AIDS, rib cages jutting from torsos, cheeks sinking, and a hodgepodge of infections running riot through their organs. But now, Nyamutora is a model of how an innovative response to this disease can actually help end the AIDS epidemic across rural Africa.
A five-year-old program here has solved a surprisingly vexing piece of the HIV puzzle: making sure infected people take their drugs. HIV medications are extremely effective. If taken properly, they make the virus all but disappear from the bloodstream, which has two big effects. One is that it restores the immune system, allowing even very sick people to become healthy again. The other is that it almost eliminates the risk of spreading the virus. Keep the transmission rates low enough and the AIDS epidemic will die out altogether.
But this one-two punch only works if people can get the medications in the first place and then stick to their regimens. If they lapse, because of side effects or any other reason, the virus roars back, as does their chance of passing it to someone else. In the United States, studies estimate that only about 35 percent of people who know they’re HIV-positive are on the medications and have virus levels so low they can be regarded as “undetectable.”
In impoverished Nyamutora, it is 96 percent.
“This is incredibly good news that they have figured out how to sustain a lot of people on therapy with minimal resources,” said David Katzenstein, an HIV/AIDS researcher from Stanford University in California who has worked in Zimbabwe for 30 years and leads the HIV testing of the villagers’ blood.
Currently, fewer than half of the 37 million HIV-infected people in the world receive anti-HIV drugs. To break the back of the AIDS epidemic, the Joint United Nations Programme on HIV/AIDS (UNAIDS) has laid out an ambitious 90-90-90 goal: Over the next four years, 90 percent of people should know their status, 90 percent of people who know they are HIV-positive should start on anti-HIV drugs, and 90 percent of those people should see the virus levels in their blood drop below the threshold where they can be detected. This week the UN General Assembly will meet in New York to galvanize political support for this program, but a major obstacle is money. UNAIDS estimates that achieving the 90-90-90 goal will cost $6 billion to $7 billion more each year.
So unless that cash materializes, the best hope is figuring out how to do more with less—and Nyamutora offers a powerful example of how this can happen. The heart of it is simplicity: Bring the drugs directly to the people who need them, and at the same visit conduct the crucial blood tests that tell whether they are working.
In the United States, lavishly funded research hospitals have multimillion-dollar machines that can reveal how the virus affects a dozen different types of immune cells. DNA sequencers spell out the genetic code of the virus and help doctors decide which drugs will work best for each individual patient. The higher-end clinics resemble art galleries, and nurses and doctors often have computer tablets that allow them to tap in patient information or retrieve case histories. Such shiny, high-tech, sophisticated systems can of course deliver state-of-the-art care, and they helped provide much of the research underpinning the three dozen antiretroviral drugs that have spared millions of people from dying horrible deaths from AIDS.
But when it comes to ending the epidemic, none of this is necessary. Just look at Nyamutora and ask a question that Zimbabweans rarely hear from outsiders: “What, exactly, are you doing right?”
At 7 a.m. on the warm, clear morning of November 27, 2015, doctors, nurses, pharmacists, and orderlies gathered in a rectangular courtyard of the Chidamoyo Christian Hospital, as they do at the start of each day, to sing. Shortly after the hymn, a Land Cruiser stuffed with anti-HIV drugs and five staff members took off for Nyamutora. They drove for 90 bone-rattling minutes over the rutted roads that crisscross this tobacco-farming region of Zimbabwe’s Mashonaland West, and when they arrived, 150 villagers were waiting for them at the local church.
The adults were decked out in their Sunday best, with women in their finest dresses and splendid headwear, and men sporting slacks and collared, pressed shirts. But many of the children had on their school uniforms, because this was not a Sunday morning service. It was a Friday and there was no holiday, no wedding, no baby dedication. Today was an event that occurs every other month, and the attendees had dubbed it Chidamoyo Day.
As the Chidamoyo team unloaded the boxes of drugs, medical records, and condoms from the Land Cruiser, the villagers rose from worn wooden benches to dance and sing a song of praise. Alvin Muparadziwa, a nurse from Chidamoyo, spoke to the group. “I’m happy about the levels of HIV in your blood,” Muparadziwa told the gathering. “All your results are very good.”
After the Chidamoyo team handed everyone their medical records, the adults and children queued up in separate lines to receive their two-month supplies of antiretroviral drugs and have their weights checked. Standing in line was the headman of Nyamutora, Matford Mtandazo, known to everyone as Sabuku, which means “the one who keeps the book” of the 56 community households.
In 2008, the older of Sabuku’s two wives, Rumbidzai, had tested positive. Their story shows why HIV kept killing so many people here even after antiretroviral drugs became available—and why the new program has achieved such success.
At first, Rumbidzai believed she merely had malaria and only was given an HIV test the third time she sought care. “I was surprised and thought, Where could this come from?” she said. At the time of her diagnosis, Rumbidzai had lost 35 pounds and learned that her immune system had almost completely collapsed. HIV targets and destroys white blood cells, known as CD4s. On standard tests, healthy people have from 600 to 1,200 CD4s. Rumbidzai only had 164 CD4s, leaving her vulnerable to even wimpy infections.
For the first year after testing positive, Rumbidzai, who had seven children with Sabuku, lived with relatives in the city where she grew up, five hours by car from Nyamutora. She received antiretrovirals and a year later returned home, her immune system improving and her weight returning. But even though her husband saw how the drugs revitalized her, he didn’t get tested himself. “I was feeling healthy,” he shrugged.
He also admits that he was afraid of the stigma. People associated the virus with promiscuity, and they shunned the infected. “People would even refrain from eating with you because they’d think you’d contaminate them,” he recalled. He and his wife kept her infection a secret, telling no one outside their family.
Meanwhile, she kept traveling back to her childhood home every two months to receive her pills. The trip soon became too expensive, and she switched to a clinic closer by, but transport still cost the equivalent of $5 each way, not a trivial sum for the family. Walking to the clinic would have taken the better part of a day.
By 2012, the virus had taken its toll on Sabuku and his second wife, Anna Chenjerai, mother of three more of his children. Both had lost many pounds. Sabuku, who ran a building contracting company, no longer could work. They had difficulty paying the school fees for their children and were driven to sell vegetables from their garden and even—in a sign of utter desperation—some of their livestock.
Finally, they got tested for HIV. Like one in every six adults in Zimbabwe, they were positive. Worse, they had almost no CD4s, the immune system’s infantry. “I had 22 soldiers,” said Sabuku. Anna had fourteen.
Chidamoyo Days had started in the village the year before. The idea came about because most villagers are Salvationists, and a nearby Salvation Army church had begun periodically sending a truck to Nyamutora to take the growing number of HIV-infected people to and from a clinic. Church representatives then approached the Chidamoyo Christian Hospital and offered to pay for gas if the hospital would send staff to the village instead. “We went through our records and realized a lot of our patients lived there,” recalled Kathy McCarty, the nurse in charge at Chidamoyo.
The cash-strapped, overwhelmed hospital—which, when the economy bottomed out a few years ago, actually accepted payment in peanuts—also saw that an outreach program could ease their patient load.
Around the same time Chidamoyo Days began, monitoring people had become simpler and cheaper. A newly developed portable machine allowed them to measure CD4 counts in the village. Katzenstein’s group introduced a novel way to test how much HIV is in a person’s blood. It requires only a finger prick and a drop of blood, which then is dripped onto a piece of paper that can be later tested in a laboratory.
“We are alive because of the Chidamoyo program,” said Sabuku.
While the program has clearly helped Sabuku, he has also helped the program.
“It has a big effect that Sabuku and his wives come,” says McCarty. “It’s an encouragement to people.” Sabuku has become a proselytizer for HIV treatment and reducing stigma, standing up at community meetings and pronouncing that he is as healthy as someone who is not infected. “I might as well tell the world I’m fine,” said Sabuku. “I tell people once I was very sick and now I’m fit because I know my status.”
The mass gathering of HIV-infected people further minimizes stigma and has everyone in everyone else’s business—in a good way. “Politically, there’s pressure for people to come and get their own drugs,” said McCarty. And villagers who miss a Chidamoyo Day are identified then and there—and have to travel all the way to the hospital to get their drugs.
McCarty, who is from California and has worked at Chidamoyo since 1980, half jokes that the villagers rarely forget to take their meds because they are afraid of her. “I tell them, ‘If you default, I’m not coming to your funeral, so you better take your drugs,’” she said. “And I tell them from the start that you can become resistant to these drugs very easily, and Zimbabwe has very limited second-line drugs, so if you become resistant I hope you can climb across the border to South Africa.”
For many villagers who have had AIDS and recovered, one of the strongest motivations to show up on Chidamoyo Days and to take what they call their “tablets” without fail is the fear of their bodies withering again, becoming so weak that they cannot work in the fields or care for their children. As one of the villagers said, “I might forget to put on clothes, but I never forget to take my medicine.”
This helps explain why children infected at birth now present one of the most perplexing challenges.
While the last adults inside the church received their boxes containing bottles of antiretrovirals, 13 kids, 7 to 19 years old, gathered under a tree outside of the church to meet with Nozipo Ncube, a middle-aged woman who is a counselor but looked like a queen in her shiny gold taffeta dress and matching headdress. “If you have any problems,” she said, “you must not hesitate to ask me questions.”
Health care workers the world over wring their hands about children infected at birth who often start shunning their pills when they reach their teens. Some began taking antiretrovirals before they could talk, and because they have never become ill from the virus, they don’t see the point. Others went untreated and only learned of their infections when they developed AIDS themselves, at, say, 10 years of age, which can lead to a supercharged version of teen angst, confusion, and defiance. But perhaps the biggest problem is the very success of the drugs: Many teens in Nyamutora now see few people dying from AIDS.
Ncube’s group counseling sessions aim to help these children understand the stakes and take their medication. “You’re going to be taking these tablets most of your life, even if you don’t have disease, even if you’re married,” she tells the group as a hen struts around the group with her chicks scrambling behind her. “It’s not your fault that you got this virus: No one chose to get the disease.”
Chidamoyo Christian Hospital now has similar projects underway at seven other villages. None has an HIV-infected headman who plays the influential role of Nyamutora’s Sabuku, and none of the other villagers have had their HIV levels or CD4s monitored. But McCarty has no doubt the programs are saving lives. “The community gatherings encourage people to take their drugs and to be there every two months,” says McCarty. “It’s like a family. You want to go and meet your friends and see how they’re doing. They’ll say, ‘Oh, that guy has improved so much.’”
She is certain this would work in many places around the world. “It’s very exportable,” says McCarty. “We don’t do anything special at all.”
There are limitations. Staging Chidamoyo Days might not make sense in cities, where myriad clinics provide care and social ties are looser. Still, about 70 percent of the HIV-infected people in the world live in sub-Saharan Africa, and millions of them make their homes in villages that do not have paved roads, are distant from clinics, share water pumps, and have one place of worship and one school for the kids. Same holds for hard-hit communities in Asia, which accounts for 13 percent of global infections.
UNAIDS’s 90-90-90 goal aims to end the global AIDS epidemic by 2030. “The End” does not mean the virus will disappear from the human population—that’s a feat only possible with a vaccine, which likely remains far off. But epidemics only keep rolling if, on average, each infected person transmits the virus to at least one other person. Over time, the decreasing number of people infecting others will cause the epidemic to peter out. “The End” also means preventing HIV-infected people from developing AIDS.
There’s a most human variable that will arise even if the money is found to treat all 37 million people living with the virus today: What will motivate them to go on drugs and take them day after day, for decades? Nyamutora spotlights a simple, cheap, and effective way to help people to stick with it.
This article first appeared on BuzzFeed News on June 4, 2016. See https://www.buzzfeed.com/joncohen/want-to-end-aids-this-village-in-zimbabwe-knows-how.
Why a Kenyan Island May Teach the World How to Beat AIDS
“What will motivate them to go on drugs and take them day after day, for decades?” is a question that AIDS researchers around the world are grappling with. As health workers in Nyamutora found, motivating patients to take HIV medication doesn’t have to be expensive. On a remote island in Lake Victoria, the PBS NewsHour team, Jon Cohen, William Brangham, and Jason Kane, visited another community that’s enjoying similar success.
South Africa’s Bid to End AIDS
On a Wednesday morning in April 2015, a line of 600 HIV-infected people snakes through the hallways to the first waiting room of the Themba Lethu Clinic, a wing of the Helen Joseph Hospital in Johannesburg, South Africa. In most places in the country, where clinics are overtaxed, this would presage a wait of up to 10 hours. But here something different is happening. Staffers at computer monitors swiftly log in people and dispatch them for triage or, if they have tuberculosis, a special area away from others. Those who only need their antiretroviral (ARV) drugs walk directly to the pharmacists, who retrieve each patient’s electronic medical record and use a robotic system to pull drugs from shelves and fill orders. The average wait time is 30 minutes to two hours to complete a doctor or nurse visit and 15 minutes at the pharmacy. A prototype ATM promises to further speed visits by directly dispensing ARV pills; one day, it is hoped, similar pill machines in shopping malls could make some clinic visits unnecessary.
“This is an awesomely efficient place,” says Ian Sanne, who heads Right to Care, a nongovernmental organization that runs this and several other clinics in collaboration with the health department. In developed countries, where patients complain about much shorter waits, this boast might seem absurd. But in South Africa, the Themba Lethu Clinic is celebrated as an example of what can be done to care for large numbers of HIV-infected people. This is at once a compliment to the clinic and a hint of the country’s overwhelming HIV/AIDS challenge.
South Africa has pledged to ramp up efforts to end its massive HIV/AIDS epidemic, the world’s largest. Come September, it will offer every infected person ARVs, which both stave off disease and make people less infectious. The immediate goal is to reach what is known as 90-90-90 by 2020: to have 90 percent of infected people aware of their status, 90 percent of known positives start ARVs, and 90 percent of that group drive the amount of virus in their bloodstream down to undetectable levels. The theory is that as viral levels drop, transmission will, too, leading the epidemic to spiral downward. This 90-90-90 target is the cornerstone of a grand campaign, articulated by the Joint United Nations Programme on HIV/AIDS (UNAIDS) and widely embraced by world leaders, to end the AIDS epidemic “as a global public health threat” by 2030.
In a nation estimated to have at least 6.6 million HIV-infected people—18 percent of the world’s total—the drive to hit 90-90-90 by 2020 seems overly ambitious to many experts. And the obstacles faced by South Africa provide a sobering reality check to the lofty, laudable aspiration of ending AIDS, a topic that promises to occupy center stage later this month, [July 2016,] in Durban at the biannual International AIDS Conference.
Models and reality
South Africa has already made enormous gains against its HIV/AIDS epidemic. When it last hosted this international gathering in 2000, then-President Thabo Mbeki and his health minister questioned whether HIV even causes AIDS, triggering widespread outrage. At the time, only the wealthiest South Africans had access to ARVs, which cost about $5000 per person for an annual supply. But by the end of 2015, the price had dropped to $100, and 3.4 million HIV-infected South Africans were receiving ARVs—more than in any other country in the world. South Africa, in fact, consumes the same amount of the life-saving drugs as Asia and the Pacific, North America, and Western and Central Europe combined.
As a result, life expectancy jumped nine years between 2005, when ARVs started to become widely available, and 2014. The country has pioneered innovative ways to deliver the drugs and help people stay on them. And South Africa’s strong cadre of HIV/AIDS investigators has made the country a hub of cutting-edge basic research and clinical trials. “Given our resources, we’ve done amazing things,” says Glenda Gray, an HIV/AIDS researcher who heads South Africa’s Medical Research Council in Cape Town.
Yet almost half the infected population today are still untreated. Some have not suffered enough immune damage from the virus to merit ARVs under current government policy. Many other infected people don’t know their status or never seek care, and still others who start treatment have difficulty taking their daily pills for years on end. Estimates suggest that because of failures in this “care continuum,” only about one in four HIV-infected South Africans has fully suppressed the virus. “We have to ride two horses at the same time,” says Fareed Abdullah, who heads the quasi-governmental South African National AIDS Council (SANAC) in Pretoria. “One is to improve our system so that the more than 3 million on treatment are retained in care and properly managed, and we also have to expand to a group that is largely asymptomatic and well.”
Adding to those challenges is South Africa’s alarming HIV incidence—the percentage of the population that becomes infected each year. The government reports that HIV incidence has dropped from a high of 1.67 percent in adults in 2005 to 1.22 percent last year, but that still translates into 330,000 new infections a year. The rate is shockingly high in women under 25, especially in the hardest hit province, KwaZulu-Natal, where incidence tops 6 percent in some communities.
Health Minister Aaron Motsoaledi, who acknowledges that the country’s aggressive HIV/AIDS program got off to a late start because of Mbeki, is confident that South Africa has the willpower and the money to hit 90-90-90. “Can we afford not to treat people?” Motsoaledi asks. “Surely, we’re going to pay much more dearly socially, politically, and economically if you can’t.” To that end, the government, which already spends $1.2 billion a year on HIV/AIDS and receives another $300 million in foreign aid, is adding $65 million annually through 2019.
But a new report concludes that meeting the UNAIDS target will require an additional $8 billion over the next five years. “UNAIDS is pushing very hard on our health ministry, which doesn’t want to be caught short again and wants to make the case that we can reach 90-90-90,” says Linda-Gail Bekker, who co-runs the Desmond Tutu HIV Foundation (DTHF) in Cape Town and is one of the co-authors of the report. The cost of drugs is just one part of the equation, she says. Reaching the target will also require massive HIV testing and the costly delivery of ARVs to patients who must be monitored and then helped if they’re not suppressing the virus. “I’m really, really anxious about the resources it’s going to take.”
There are scientific questions, too. The assumption that reaching the 90-90-90 target will end AIDS is based on mathematical models that factor in ARV “coverage” in combination with other proven prevention strategies like male circumcision, condom promotion, and behavior change efforts. Researchers note that in large epidemics like the one in South Africa, which has spread far beyond “concentrated” populations such as men who have sex with men and sex workers, such strategies could prove less effective than expected, allowing HIV to continue spreading at high rates even after the country reaches 90-90-90.
Epidemiologist Salim Abdool Karim, who runs the Centre for the AIDS Programme of Research in South Africa (CAPRISA) in Durban, points to recent data from Botswana that call into question the model’s assumptions. Botswana, which is relatively wealthy and has a tiny population of 2 million, has nearly reached 90-90-90, as shown in a study published online on March 23, 2016, in The Lancet. But incidence has barely budged, in part because the missing 10-10-10 continue to spread the virus. “For a country that’s close to 90-90-90, the incidence is ridiculously high,” Karim says. “It’s scandalous.”
A report published by SANAC and the health department further questions the 90-90-90 mathematical modeling. Even if 90-90-90 leads to big declines in new infections by 2030, that report suggests that incidence in South Africa’s population of 53 million will not quite drop below 0.1 percent—the level that UNAIDS says it must reach for an epidemic to end.
The bottom line is that it remains an open question whether the 90-90-90 treatment goal really can stop the spread of HIV in South Africa. Some of the world’s largest controlled trials of treatment as prevention (TasP) are underway in the country to try to answer it.
In an area known as Mfekayi in rural KwaZulu-Natal, two dozen people are sitting on the shaded porch of a plywood shack waiting their turn to see a counselor. The shack is the Egedeni Clinic, and the people are participants in a 28,000-person, multi-site clinical trial that will assess the precise relationship between increased levels of HIV suppression in a community and drops in incidence. At Egedeni and 10 other clinics across the province, the TasP study offers ARVs to all infected participants. Another 11 TasP clinics instead offer treatment in keeping with current government recommendations, meaning that people start ARVs only after their immune systems show signs of damage.
One by one, the participants hand bottles of ARVs they received a month earlier to the counselors, who count the remaining pills. This ritual, which is a crude way to monitor adherence, underscores an obvious limitation of the underlying strategy: Even if ARVs make people less infectious, TasP relies on the fickle relationship humans have with taking daily medications.
Run by the Africa Centre for Population Health in nearby Mtubatuba, TasP is the furthest along of four similar large trials in sub-Saharan Africa that are examining the care continuum and the real-world outcome of “universal treatment.” Early analysis of TasP results found that fewer than 40 percent of the people who tested positive sought care within three months, as recommended. This first step still has remained a major stumbling block on the road to 90-90-90.
At the International AIDS Conference in July , the researchers plan to reveal whether their intervention has reduced incidence. “This will be the first opportunity to assess whether, in fact, the biological rationale is actually true in practice,” says Deenan Pillay, a clinical virologist who heads the Africa Centre. But Pillay says the study already has made clear that ending AIDS is not simply a matter of “let’s just treat everyone and everything will be OK.” In the final analysis, he says, the power of TasP depends as much on human behavior as it does on biology.
Jacqualine Ncube, a 19-year-old restaurant worker, first took an HIV test when she was in high school. At the time, Ncube spent many hours after school hanging out at DTHF’s Youth Centre, which abuts the struggling township of Masiphumelele outside of Cape Town. The Youth Centre offers teens internet access, holds soccer matches, loans surfboards, and provides care at a health clinic. Kids also earn “Tutus,” good for shopping vouchers or food, for everything from helping the community to taking an HIV test. When Ncube got her first results, she was overwhelmed. “I really screamed,” she says. She was negative.
Ncube has repeatedly tested negative, and in April 2015 she joined the Youth Centre’s Pillsplus, a study of what’s known as pre-exposure prophylaxis, or PrEP, in 150 teens. With PrEP, uninfected people take daily ARV pills to prevent infection. Although PrEP is a proven strategy, South Africa recommends its use only for sex workers, and Ncube is one of the first heterosexual teens in the world to take ARVs for prevention. She still uses condoms with her boyfriend, but says she wanted to try PrEP because “no protection is 100 percent.”
DTHF’s Bekker, who is heading Pillsplus to assess PrEP’s acceptability in teens, contends that PrEP should be provided to all people at high risk of infection. “When I sit opposite a 17-year-old young woman, I have nothing to offer her,” Bekker says.
CAPRISA’s Karim says using PrEP in young women could be key to breaking the epidemic’s back. About 30 percent of new infections in South Africa occur in young women between 15 and 24 years of age. The new infection rate in men in the same age bracket is more than four times lower. In some districts of KwaZulu-Natal, a woman has a 60 percent chance of becoming infected by age 34.
Sex and age
To understand the pattern of viral spread, CAPRISA and the Africa Centre mapped out the infection cycle between men and women of different ages in KwaZulu-Natal. The study analyzed the genetic sequences of HIV isolated from 858 men and women, all between 16 and 35 years old, who belonged to the same sexual networks. The viral genetics linked different isolates and indicated which ones were older, allowing the researchers to infer who infected whom. Teenage girls were infected by men who were, on average, eight years older. After the age of 24, people typically became infected by partners their own age, with transmission more frequently moving from woman to man. “They are trying to find lifetime partners at this age,” Karim says. These older men are the same group having sex with the youngest women. “We have to break the chain between men in their late 20s and teen girls,” he says.
PrEP can help address shortcomings of TasP, Karim says. In the infection-cycle study, men who infected younger women had extremely high HIV levels, indicating they recently acquired the virus and thus would not appear infected on standard antibody-based tests. “If your strategy is to test and treat these people, you’re not going to catch them,” Karim says. Men are also less connected to the health care system and often migrate for work, he adds, making it more difficult to help those who know they are infected fully suppress the virus. Giving PrEP to young women sidesteps the male dilemma. “We just have to protect girls for five years in that critical risk period until they find their partners,” he says.
Karim says new biomedical interventions on the horizon may bolster prevention efforts. His group plans to report at the Durban meeting that it has identified an unusual microbe linked to vaginal inflammation in women in KwaZulu-Natal. Treating it could potentially lower their risk of HIV infection. Injectable ARVs that last for two months are also being tested in South Africa and elsewhere, and those could eliminate the challenge of taking daily pills—a key problem for both treatment and PrEP. Next fall, South Africa plans to launch the world’s only efficacy trial of an AIDS vaccine—the strongest preventive medicine of all.
For now, 90-90-90 is the most powerful tool available to South Africa in its quest to end its epidemic, even if PrEP and other new strategies ultimately are needed. SANAC’s Abdullah takes a pragmatic view of meeting the UNAIDS deadline. “I think we should plan for it, because if we don’t hit it by 2020, we’ll do it by 2022,” he predicts. “What we’re really after is bringing down new infections to low levels,” along with getting as many HIV-infected people as possible on treatment and living longer lives. The virus itself, Abdullah says, “will be with us for the next 100 years.”
From: Cohen, Jon. “South Africa’s Bid to End AIDS.” Science, June 29, 2016. doi:10.1126/science.aaf5820. Reprinted with permission from AAAS. See: https://www.sciencemag.org/news/2016/06/south-africa-s-bid-end-aids
To read more from Jon Cohen: Ending AIDS
How South Africa, the Nation Hardest-Hit by HIV, Plans to “End AIDS”
Many of the South Africans featured in this article also spoke with Jon Cohen, William Brangham, and Jason Kane for this installment of “Ending AIDS.”
How much do antiretrovirals cost?
Antiretroviral medications (ARVs) have made it possible to live with HIV/AIDS for decades. But getting access to these lifesaving medications depends on where you are. Their cost varies widely among countries and, depending on how wealthy a country is, their cost might pose more or less of a burden on the average citizen. The first of these two maps shows the average cost of Efavirenz, a widely used ARV, in the countries covered in this e-book. The map on the right shows the cost of Efavirenz as the percent of an average individual’s yearly income.
And how much of a burden do they pose?
South Africa: Portraits of HIV Survivors and Those Who Are Gone
With the increasing availability and affordability of ARVs and sustained international involvement to end the global AIDS epidemic, many countries have seen huge advances in the fight against AIDS. But some vulnerable communities are not feeling these improvements to the same extent.
The following photo essay features the work of award-winning photojournalist Misha Friedman, who traveled to South Africa to capture the faces of those ravaged by the crisis. For Friedman, capturing the faces of those left behind is important but troubling.
“Most of the people you see here are dead,” Friedman told The New York Times in 2012. “My images have not really helped them. Maybe they’ll help people in the future. Maybe they’ll help with fundraising here and there. But to these particular people, they did not help.”
Friedman recently returned to South Africa to re-photograph women in Gugulethu, a township of Cape Town, who are living with both HIV and multi-drug-resistant tuberculosis. He first photographed three women from this community on a reporting trip three years ago. Today, only one is still alive.
—J. D. M.
These photos were first published by PRI’s The World on August 9, 2016. See: http://www.pri.org/stories/2016-08-09/grip-hiv-and-tuberculosis-south-africa-portraits-survivors-and-those-who-are-gone.
To read more from Misha Friedman: HIV and TB in South Africa, Revisited
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The high HIV risk that hovers over young women in South Africa isn’t a statistical curiosity. As the Desmond Tutu Foundation’s co-founder Linda Bekker explained to Jon Cohen, girls in their teens and early 20s often have little control over their sex lives. Throughout sub-Saharan Africa, larger social and economic circumstances—poverty, a need for education, and customs that encourage marriage at ages as early as 12—often mean that girls become sexually active at a young age.
Award-winning science journalist Amy Maxmen focused on these factors in her reporting from South Africa and Malawi. In both countries, she found that doctors, social workers, international aid program leaders, and even Malawi’s She-Chief now view the spread of HIV as a symptom of the larger challenges that young women in their countries face.
Only a few years ago, this meant that young, at-risk women would have had little choice but to hope that systemic problems could be solved before they caught the disease. Now, however, the class of drugs that Cohen reported on—PrEP—is giving them a means to protect themselves from infection in the short term.
In the first two articles, Maxmen reports that these medicines and other new devices such as vaginal rings have had limited success in reaching their target audience in South Africa. But if problems related to poverty and education are addressed, they could save lives, while African leaders—like Senior Chief Kachindamoto, interviewed in the third article—change the conditions that enable HIV to spread.
Older Men and Young Women Drive South African HIV Epidemic
Sex between young women and older men is no secret in South Africa. The name “blesser” is commonly used to describe a man who may at first pay for a teenager’s bus fare to high school, then buy school supplies she cannot afford, and perhaps lunch at a decent café. Over time, the adolescent sleeps with her provider.
A genetic analysis now suggests how this social phenomenon plays into the cycle of HIV transmission in the country, which has the world’s largest HIV epidemic. By analyzing the similarity of viral genetic sequences from nearly 1,600 people with HIV in one community in KwaZulu-Natal, the study shows that adolescent girls and women in their early 20s tend to pick up the virus from men aged around 30. When the women grow older, they go on to infect their long-term partners, who in turn may pass the virus on through affairs with younger women.
“This is the engine driving high rates of HIV,” says epidemiologist Salim Abdool Karim, senior author of the unpublished study and director of the Centre for the AIDS Program of Research in South Africa (CAPRISA).
Karim thinks that the study adds to growing evidence that HIV-free young women in regions with very high rates of HIV should be encouraged to take antiretroviral medications regularly to prevent infection. The World Health Organization also recommends that people at substantial risk of HIV be offered what is known as PrEP (pre-exposure prophylaxis). But, owing in part to disappointing results in clinical trials, the South African government has not yet recommended PrEP for young women.
Karim’s study also shows the importance of making broader social changes, adds Michel Sidibé, executive director of the Joint United Nations Programme on HIV/AIDS (UNAIDS). In parts of South Africa, eight times as many teenage girls have HIV as do teenage boys, and in some communities in KwaZulu-Natal, a 15-year-old girl has an 80 percent risk of getting HIV in her lifetime. “Something that underlies the study is how common it is for older men to have sex with young girls. Pills are useful, but how can we break this silence around the lack of enforcement of laws that protect young women? How can we invest in the capacity of people to claim their rights and reduce this kind of violence?”
Researchers have long known of the high burden of HIV infections in young South African women, and that they get infected by older men, says Thomas Quinn, an epidemiologist at Johns Hopkins Bloomberg School of Public Health in Baltimore, Maryland, who was not involved in the study. But, he says, “it is very exciting to use molecular genetic information to actually show how the virus spreads among people”—and to pinpoint the ages of women and men at key points in the cycle of HIV transmission.
Karim has tracked HIV genetic data for the past couple of years, and his work has already affected how governments and international organizations tackle the virus. He has been sharing results regularly with Deborah Birx, the U.S. Global AIDS Coordinator who oversees the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR), the largest federal funder of HIV-prevention research.
In 2014, PEPFAR launched an initiative called DREAMS [“Determined, Resilient, Empowered, AIDS-free, Mentored, and Safe”] to protect young women from HIV, in response to the finding that more than 1,000 women aged 16 to 24 become infected every day in southern and eastern Africa. When Birx heard details of Karim’s results last year, she convinced PEPFAR to target particular demographic groups. For example, she says, half of the recipients of the $85 million DREAMS Innovation Challenge, announced on July 18, 2016, are 15- to 19-year-old girls.
Despite the results, health officials remain reluctant to recommend PrEP for adolescent girls and young women. In June 2016, the South African government endorsed PrEP for sex workers—but not for other high-risk groups, such as gay men and young women. One reason for its hesitancy is that the treatments have not proved effective in clinical trials, and blood tests have suggested that is because women in these trials did not consistently take their medications (either daily pills or a vaginal gel).
But at the conference, the CAPRISA team announced another as-yet-unpublished finding that suggests a woman’s vaginal microbiome may be in part responsible for the inefficacy of PrEP. A study of women who used the gel tenofovir to prevent HIV infection suggests that it was less effective in those who had Gardnerella vaginalis bacteria in their vaginal lining. The researchers found that G. vaginalis absorbed the PrEP drugs, reducing the amount of medication in the blood.
This hints that more women may actually have taken their medications than the disappointing blood tests from earlier trials suggested, Karim says—and also that treatment for an imbalance in vaginal bacteria might help PrEP to work better in some young women.
This article was first published by Nature on July 18, 2016. See http://www.nature.com/news/older-men-and-young-women-drive-south-african-hiv-epidemic-1.20273.
New Products Help Prevent HIV, But Young Women in South Africa Aren’t Taking to Them
DURBAN, South Africa—Where Zuma Mabuza lives, in KwaZulu–Natal, getting HIV—the human immunodeficiency virus—can feel inevitable. “If people in the community talk about HIV, the conversation is usually about which treatment options are best,” says Mabuza, a 28-year-old woman who sells used clothes to provide for her young daughter. Mabuza is not her real name; we have changed it to protect her identity because she is part of a large medical test of anti-HIV drugs.
In KwaZulu–Natal, which is in the eastern part of South Africa, almost 4 in 10 people test positive for the virus. Although AIDS deaths have plummeted because of antiretroviral treatments, the new infection rate has not. Mabuza’s boyfriend is HIV-negative, but the stakes are high when the disease is so common. If he had an affair with someone who carries the virus, Mabuza could get infected through trusted, unprotected sex or a broken condom. If she started a new relationship, her partner could bring her disease. If she was sexually assaulted, her assailant could be HIV-positive.
Two years ago, Mabuza heard about a vaginal ring that could protect her, and she decided to enroll in the medical trial that was testing it. The ring looks like a gummy bracelet. It is inserted into the body to secrete a drug named Dapivirine—a reverse transcriptase inhibitor that blocks the ability of HIV to replicate. Every month Mabuza and about 2,600 other women in the trial went to clinics in South Africa, Malawi, Uganda, and Zimbabwe, dropped off their used rings, and picked up new ones. Half of the rings contained Dapivirine and half contained nothing.
The Dapivirine ring is one of scientists’ latest attempts to stem the new infections at the center of the HIV epidemic. Worldwide for the past decade, 2.5 million people have gotten infected annually. In sub-Saharan Africa women account for the majority of new cases. About 5,000 young women and teenage girls there acquire HIV each week. In a survey in KwaZulu–Natal, 24 percent of females under age 21 tested positive for the virus whereas just 2 percent of males the same age did. These young women often infect their same-age partners later in life, who in turn transmit HIV through affairs with younger women, according to genetic analyses.
Researchers had hoped to break the cycle by giving young women HIV drugs before they are infected. It’s a mode of therapy referred to as pre-exposure prophylaxis, or PrEP. However, when PrEP was given to women as a pill, the results were discouraging because many study participants didn’t take it daily. And the first trial results for the ring are not spectacular. The numbers, reported in February 2016, show that young women don’t adhere well to the treatments. Often, they took the rings out. The exact reasons are a puzzle, but many women may have found the insert uncomfortable, or worried about what the men they slept with would think.
In the face of this unexpected setback, scientists are now trying to develop new, less invasive products as well as giving more forethought into the social circumstances surrounding PrEP use. “If women feel they cannot control their exposure to the virus, if they’ve seen their mothers get infected or their family members die from AIDS and they are afraid of that, we want to offer them protection,” says microbiologist Zeda Rosenberg, chief executive of the non-profit organization developing the ring, the International Partnership for Microbicides.
Rosenberg has focused on women since the early days of the HIV epidemic in the late 1980s. “Even though the disease had started in homosexual men, we were worried because sexually transmitted diseases almost always affect women worse,” she explains. In 2003 Rosenberg and her colleague published a report on a microbicide gel that killed HIV, which women could apply before sex. By the time they got the formula right, however, an unexpected problem emerged. It failed to protect women in large clinical trials because women rarely used it.
So in 2010 Rosenberg began to devote attention on the vaginal ring. “We thought theoretically a ring should be easier because a woman just leaves it in,” she says. The Partnership licensed the HIV drug Dapivirine from Janssen and spent a few years developing the product. Then the National Institutes of Health funded clinical trials.
In February 2016, the lackluster results of the largest trial—the one including Mabuza—were reported in The New England Journal of Medicine. During the study, 6 percent of the women got HIV—71 in the treatment group and 97 from a group that got a sham treatment. When researchers analyzed the rings women had returned to the clinic, they found high levels of Dapivirine, indicating that many had removed the rings from their vaginas at some point every month. Women between the ages of 18 to 21 were most likely to have taken the ring out whereas women aged 25 and older were more likely to have kept it in. When used, the ring worked; these older women were 61 percent less likely to get HIV compared with women in the sham ring group.
The researchers think the reasons for ring removal are that, in general, young women are not comfortable with the device. Vaginal rings are not common as birth control in Africa as they are in the U.S and Europe. The rings with Dapivirine can cause side effects such as mild nausea and fatigue. Women also might not have liked how the ring felt or their partners might have felt it and not wanted them to use it. In addition, women may not have been convinced that the ring worked. Basically, for women who were not sick, the hassles may have outweighed potential benefits.
Women under 21 have not adhered well to another type of HIV-prevention, too. Daily antiretroviral pills, called Truvada, hardly worked for them in trials even though the same pills staved off HIV in gay men, intravenous drug users, and sex workers who took them regularly. In 2012, the drug got a stamp of approval from the U.S. Food and Drug Administration based on data from these groups showing that it is up to 92 percent effective. Since 2012, Truvada has been prescribed to more than 50,000 adults in the U.S.—mostly gay men in their late 30s.
To improve compliance among women in Africa, researchers are now investigating products that may change the hassle–benefit equation. Within a year, clinical trials will begin on an injection of an antiretroviral drug, called cabotegravir, to see if it prevents infection for four or eight weeks. Another injectable at an earlier stage of research could provide protection for three months. And a vaginal ring in the pipeline combines birth control with HIV drugs. Simply knowing that research shows that the ring does work, when used properly, could make a big difference. “I want the ring because we know it’s effective,” Mabuza says. “I hope other women will feel the same.”
At the same time, scientists have realized they need to support young women socially and economically as well as medically if they hope to reach them with drugs or any other intervention. “Until I know the context of a woman’s life I can’t make a difference,” says Gita Ramjee, director of the HIV Prevention Research Unit at the South African Medical Research Council. “We need to understand where she comes from, what happens when she gets home, what are the challenges she faces. Is she having sex because she likes sex, or is she desperate and needs money?”
In a country where 23 million people live below the poverty line, young women can be enticed by men who offer them goods ranging from food to a nice dress. And they have little power to demand condom use in such transactional relationships. In South Africa these men even have a positive-sounding name: blessers. Mabuza tells me that she worries about how her eight-year-old daughter will fend off blessers when she enters high school. “These men destroy a child’s future,” she says, “but there’s not much you can do to stop them.” Researchers are trying to lessen the problem by giving cash to young women in return for good grades or attendance at sexual education and empowerment sessions. But results have been modest. Some say it is because the amount of cash is small.
In a half dozen studies across eastern and southern Africa researchers are now testing various models of PrEP delivery to young women. At a small HIV clinic in the mountains of KwaZulu–Natal—one branch of the Center for the AIDS Programme of Research in South Africa (CAPRISA)—staff have discovered that trust is key. They’re now offering Truvada pills to 16- to 25-year-olds. In addition, they hold educational sessions that provide teenagers with information along with a safe place to talk and peer-to-peer programs that instill feelings of self-worth. And clinicians have become involved in patients’ lives beyond the medical setting. “We find ourselves helping the girls apply to universities—it’s outside of science but it all matters,” says Célia Mehou-Loko, a research fellow at CAPRISA. “You start to realize that putting in an implant or giving a pill is not enough because their needs are so complex,” she says. “We need to show them we care.”
This article was adapted from a story published by Scientific American magazine on August 30, 2016. The original version is at:http://www.scientificamerican.com/article/hiv-prevention-runs-into-trouble-in-south-africa
Hail to Malawi’s She-Chief Fighting HIV
DURBAN, South Africa—When the International AIDS Conference is held in Africa, not only do you get Elton John, Queen Latifah and the rest of the celebrity set in attendance, but African royalty appear as well. They’re concerned for their people—and it’s these traditional leaders, as opposed to politicians, that often hold sway.
That’s especially true in Malawi, where 10.3 percent of the population lives with HIV. Reflecting gender disparities in the country, more women (12.9 percent) than men (8.1 percent) have the disease, according to the UK-based organization, AVERTing HIV and AIDS. However, Malawi’s rate of new infection has been dropping, and perhaps that’s in part due to Senior Chief Theresa John Ndovie Kachindamoto. She’s a small woman with a large presence. When we first met at the meeting, she was dressed in a gown sewn of patterned fabric and leopard print, wearing a ring of leopard fur around her head.
From a region of central Malawi called Dedza, Kachindamoto rules over 545 villages and governs 51 chiefs. As a powerful female ruler in a man’s world, she’s taken some bold steps to save young women from infection. What follows is an edited version of our dinner conversation.
How did you become senior chief?
In 1958, I was born into a royal family of twelve. I was the youngest, and as a child my father sent me to boarding school. I was upset because I wanted to stay at home, but my father said that as the youngest, I would live the longest, and therefore I should be well educated so that I could obtain everything I needed in the future. So I went to school, got good grades, and eventually became a secretary in the city of Zomba.
When my father died, his oldest sons took power until they died as well. Then in 2001, the royal family came to Zomba and told me to return home and take the throne. By then I was married, and my husband did not want to leave the city. But my family said, “When you married her, did you not realize she was of royal blood?” He said yes, and they said, “Then you know you have no choice.” So we went.
Malawi’s then-president, Bakili Muluzi, came to install me to the throne in 2003. In the ceremony he thanked the royal family, and said he’d like to see more women in power.
What did you do first?
When I returned to the district, I was annoyed to see girls as young as 12 with babies—of course, they had dropped out of school. And that meant they would never have a job, and would always remain dependent on others. So the first thing I did was to call a meeting of the community, regional chiefs, religious leaders and government leaders. I said, “Let us agree on bylaws to prohibit child marriage.” I knew it was happening because when families force their young daughters to get married they can get money or cows in return. And I knew that local chiefs and headmen looked the other way because they got something in the transaction as well. So to these chiefs I said, “If a girl younger than 15 is married, charge the family five to seven chickens—and if you don’t, I’ll dismiss you.”
Soon after this announcement, I heard about child marriages in four villages, so I asked my councilors to bring these headmen to me, and I dismissed them all. Then the child marriages were broken up, and the children sent to school. All the chiefs and pastors were shocked. But I told people, “Times are changing. This worked in the old times but no longer.”
Since then, we’ve broken up many child marriages. We do it with the help of “secret mothers” and “secret fathers”—wise people whom the villagers trust. They go to the couples and say, “Our chief wants this girl to be educated.” Because of this, 814 children from terminated marriages have returned to school since I’ve taken power. My family and I pay for some of their school-related fees with our small salaries. So do the president’s wife and many others in the community.
How have you responded to HIV?
Soon after I took power, people from the hospital told me that many young people in my region had HIV/AIDS. So I made a bylaw that before marriage, both people must go for HIV testing and counseling. And I said that we must stop “hyenas.” This is what we call men who have sex with women outside of marriage.
In general, my push to educate girls helps with HIV too. They learn about HIV in school, they go for HIV testing, and if they are in school they are not as likely to get pregnant. If I could, I’d make it illegal for women to be married before age 21, just to ensure that they will continue with their education and not just drop out and stay at home where they are dependent on what a man does—but I don’t think that law will be accepted!
Are you a popular leader?
No. People were really upset with me when I made these rules. They said, “Why did the royal family choose this woman?” But they can say whatever they want and it doesn’t matter, because I have authority. Now many in the community realize I’m telling the truth, and they respect me. But still, many men don’t like me. They say they hope I die, and I just reply, “I will not die.”
This article was first published by Global Health NOW on August 1, 2016. See http://www.globalhealthnow.org/2016-07/hail-she-chief
To read more from Amy Maxmen: What’s Driving HIV in South Africa
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PrEP can save the lives of young people at risk of HIV, but only if they take it. The same applies to those who already have the virus, and depend on ARVs to keep it from growing or advancing to AIDS.
Malawi, where Jen Stephens reported on HIV, has one of the highest HIV prevalence rates in the world. It also has one of the youngest, fastest-growing populations: Over 67 percent of Malawians are under the age of twenty-five. This combination of widespread HIV and rapid population growth places Malawi’s youth in a dangerous situation. Many have inherited the virus from their HIV-positive mothers; young girls run the risk of becoming infected by older men. The same problems that keep young people in South Africa away from treatment—such as stigma or the side effects of medication—also threaten Malawi’s ability to help these groups.
Overcoming these obstacles and keeping HIV-positive teenagers on their medication requires more than financial support or medical expertise. They need care and encouragement—and to feel that they belong to a community. In the following articles, Stephens reports on teen clubs and support groups where teenagers living with HIV keep each other on treatment.
The Forgotten Generation: Young People Born With HIV in Malawi
Some 200 young Malawians are tightly packed onto benches, leaving two girls and two boys standing in the middle wide-eyed and apprehensive. One of the girls, not a day older than 15, is shifting nervously from foot to foot. The four are newcomers to Tisungane teen club. After introducing themselves, 200 teens descend to give them a hug or a jovial slap on the back. Smiles erupt onto their faces. These four have taken the first step in getting the support they need living as teenagers with the human immunodeficiency virus (HIV) in Malawi.
Tisungane Clinic’s teen club in Zomba Central Hospital is one of many throughout Malawi that supports HIV-positive adolescents. These clubs are a lifeline for teens—mostly between the ages of 10 and 19—who are not only dealing with the physical, emotional, and sexual changes of adolescence, but are also learning for the first time that they have been lied to their whole lives about a disease that leaves them feeling stigmatized and alone. However, hope remains as the teen clubs provide the space for acceptance and healing.
HIV in Adolescents
According to UNICEF, the leading cause of death in Africa of people aged 15–19 is HIV. Despite a decline in HIV in the general Malawian population from nearly 12 percent in 2004 to just over 10.5 percent in 2010, the prevalence rate among adolescents has actually increased in 15 to 19-year-olds. In 2013, the Malawian Ministry of Health estimated that 4.2 percent of girls and 1.3 percent of boys were living with HIV. This translates to approximately 93,000 adolescents living with the disease with nearly 7,000 HIV-related deaths among teens that year.
The forgotten ones
Among this group is the cohort of children who simply missed out on today’s successful and widely promoted “prevention of mother to child transmission” (PMTCT) programs. These programs stop HIV-positive mothers from passing the virus to their babies either in utero, during birth, or while breastfeeding.
However, in the late 1990s and early 2000s, these PMTCT programs didn’t exist. Even just before 2011, anti-retroviral drugs (ARVs), or anti-HIV medicines, were only given to pregnant women with a low number of CD4 cells—helper cells that fight infection. In 2011, Malawi pioneered Option B+, offering lifelong ARVs to all HIV-positive pregnant women regardless of CD4 count. In 2013, nearly 80 percent of HIV-positive mothers in Malawi were receiving ARVs; this is in stark contrast to 2009, when less than 20 percent received the drugs. Consequently, HIV transmission rates between mother and child have fallen dramatically.
Option B+ is a huge success that has now been adopted by most countries in sub-Saharan Africa. In the shadows, however, are the children who were born to HIV-positive mothers before services were available. These children are now coming of age, learning not only that they are HIV-positive for the first time, but that they have been deceived by the adults they trusted.
“I’m better off dead than alive”
Phalyce is 18 years old and has HIV. She’s been living with the disease since she was born, but it wasn’t until she was 12 years old that she learned about her condition. “I was 12 and taking medicine every day but my mom didn’t tell me why. [One day] I overheard it at the hospital,” says Phalyce. After Phaylce learned of her status, she tried to kill herself by ingesting a full bottle of her HIV medication. She felt hopeless, lied to by her own family, and without the support she needed to keep living.
Phalyce’s story is not uncommon. Violet, another young person living with HIV in Malawi, was told by her family that she was taking medicine (actually HIV medication) for “energy.” Violet found out her status after secretly reading her hospital file when she was 14. “It was very difficult. I defaulted on my medicine,” Violet reflects, “There wasn’t a proper way to tell me [about my HIV status]. Maybe they [the guardians] were afraid.” Maria, 21, recalls when she was 17 and found out her seven HIV-negative older siblings had hidden her HIV-positive status from her, “I kept thinking, ‘I am better off dead than alive.’”
A ray of hope
What pulled these teens away from the brink of hopelessness was the sense of community they found through teen clubs and support groups for young people living with HIV.
Tiwale means “shining star” in Chichewa, one of the local languages of Malawi. Similar to Tisungane Clinic and teen club in Zomba, Tiwale Clinic and teen club operates every second Saturday at Bwaila Hospital in Lilongwe. More than 430 HIV-positive young people from ages 10 to 20 attend clinical visits to receive medicine without the throngs of adults present on weekdays. This privacy is important to young people. “If teens go to the adult clinic, they feel shy. They can even cry in the queue,” says 23-year-old Rejoice, a teen club peer support leader.
Both the Tiwale and Tisungane clinics were started after clinicians noticed how many adolescents stopped taking their medicine, also known as defaulting—a behavior that puts their lives in danger as HIV can quickly destroy the immune system and mutate, leading to drug resistance. According to the “Guidelines for the Use of ARVs in Pediatric HIV Infection,” published by the National Institutes of Health, poor adherence among adolescents may be due to a number of factors, including side effects, frequency of dosing, and psychosocial reasons.
Many teens default on their medicine after the shock of learning they are HIV-positive.“I was weeping when I found out, confused, and crying. I stopped taking the medicine. Without Tiwale, I would have been dead,” Maria said. For HIV-positive teens in boarding school, it may be a question of how best to hide taking their medication when confronted with frequent doses. “My friends didn’t know. I used different pill bags and told them it was for asthma,” Maria explained. For these reasons, teen clubs continue to focus on the importance of adhering to medicine.
In addition to clinical assessments, teens attend sessions on life skills and receive psychosocial support. Baylor University began one of the first adolescent clubs in 2006 at their clinic near Kamuzu Central Hospital and currently has approximately 800 teens enrolled. According to Judith Lungu, special project and training coordinator at Baylor, “For a long time there have been adult HIV programs and the adolescent group has been more neglected.” Simon Mtambo, Teen Club coordinator at Baylor, adds, “There is a power [for these teens] in just knowing another adolescent that is HIV-positive.”
The one precondition to entry in the clubs is that teens must know their status. However, disclosure in the community is still a hurdle for most teens as stigma is a painful reality. At 14, Innocencia told her best friend of her status. Now 18, she remembers how she felt after her friend spread the news: “I didn’t want to go back because I was ashamed. I relocated to another school.” Twenty-one year old Tionge (not her real name) recalls a similar incident with a friend when she was 14: “People are not educated enough.”
According to UNICEF, there are nearly one million children orphaned by AIDS in Malawi. Teen clubs provide a supportive adult network that can step in during cases of discrimination from guardians. Innocencia was being raised by her grandparents and experiencing discrimination. “He (my grandfather) wouldn’t eat my food, nor touch my property,” she said. Staff at Tisungane teen clinic intervened on Innocencia’s behalf.
Nzotheka, meaning “it’s possible” in Chichewa, is a support group for HIV-positive youth that meets weekly. Group leader Harrison, age 23, comments, “The group is very important. We encourage each other to speak publicly.” Group member Yamikani, age 20, grew up in an orphanage and learned of his HIV-positive status when he was 12. Now he says, “You can live a positive life; you can live the life you want.”
Despite the successes of the teen club, Dr. Gumulira, senior clinician for pediatric and adolescent services at Lighthouse Clinic in Kamuzu Central Hospital, worries about the “poverty cocoon,” given [that] the majority of teens have lost one or both parents: “How will they fit into society if they don’t have all the jigsaw pieces? Maybe they had to delay school—what next? Did we make them live so long just to experience poverty?”
This cry for education and career development is also voiced by the teens. Harrison concurs, “Most people don’t have biological parents. They don’t have school fees and many can’t finish tertiary education. We need more educated people living with HIV.”
Yanjanani, whose name means “unity,” lost both parents at a young age. Her lifelong dream is to be a nurse. Although admitted to nursing school last year, Yanjanani, age 21, has struggled to meet tuition fees. “Girls must be encouraged to go to school, to depend on themselves,” she says. As one member of Nzotheka echoes, “Train the youth so they can help themselves. Let us stand on our own.
Despite these challenges, teens find support in the clubs and fellow members. Maria explains, “When not in teen club, I was living a life of stress, very alone. My new life is much better. I can disclose freely, be encouraged by my friends. We are people taking the same drugs.” Innocencia says, “I’ve accepted it [my status] and nothing can change. I can do anything on my own.”
This article was adapted from a story published by Global Health Now on September 28, 2016. The original version is at: http://www.globalhealthnow.org/2016-09/forgotten-generation-young-people-born-hiv-malawi
Tradition Changes Fate of Girls in Malawi
Innocencia Mpinda is a bright 18-year-old with a radiant smile. She was born with HIV in the district of Zomba, Malawi, and learned of her HIV-positive status at the age of 14. Having lost both parents, Innocencia was raised by her grandparents. When Innocencia’s grandfather found out that she was HIV-positive, in addition to the painful stigma he inflicted upon her, he said he could cure her of the disease by having sex with her. She considered running away.
Innocencia was spared by moving in with her great aunt. “I feel safe now….now. I’m strong because I know what people do,” she said.
Bridget Chetama is the social work coordinator at Tikondane Care for Children In and Off the Street, a faith-based organization that operates a transit shelter for children living on the streets of Lilongwe, the capital of Malawi. The name Tikondane, meaning “let us love each other” in Chichewa, was chosen by the first group of children at the shelter. Chetama recalls a similar story of a young girl who did run away from an abusive situation, but not before contracting HIV:
Cynthia (not her real name) was 10 years old when she was found by a Tikondane social worker during an “outreach night” when workers go to the street to offer assistance to children. The little girl had only been on the street two nights. Since she had blood on her dress, she was taken immediately for a medical evaluation. The initial HIV test came back negative. However, when they brought her back for a re-test, the test returned positive.
Cynthia lived with her biological mother and HIV-positive stepfather. Her stepfather would buy gifts for the little girl and then send the mother out to farm the land so that he was alone with the child. Over the three-month period prior to her running away, he raped her repeatedly. According to Chetama, he clung to the traditional belief that sex with a virgin will cure HIV, also known as the “virgin cleansing myth.”
The stories of Innocencia and Cynthia highlight the detrimental effects of traditional beliefs about HIV that persist in Malawi. Other traditional customs outlined in a detailed 2006 study by Malawian Human Rights Commission have been blamed for putting girls at risk of contracting the disease. In some parts of the country, including in southern areas dominated by the Yao or Lomwe tribes, a girl participates in secretive initiation ceremonies when she comes of age.
The “kusasa fumbi” is a tradition that roughly translates to “shedding off the dust” of childhood by having sex with a man. In some instances, an older man known as a fisi, or ‘hyena’, will come to sleep with the girl in the middle of the night. The fisi may have unprotected sex with multiple young women, potentially fueling the spread of HIV in an area of the country where up to 14 percent of the population may be HIV-positive. According to Clara Banya, a member of the Coalition of Women Living with HIV (COWLHA), “Malawi is rich in culture,” but a fisi can “sleep with 100 girls in the name of culture.”
Tradition is vital to Malawian culture. Although vilified and often seen as immutable, tradition may be the linchpin in bringing about change in HIV among adolescent girls. Traditional authorities work with the local government and are hugely influential in their communities. As Bridget Chetama from Tikondane notes, “We should use the leaders.”
The Family Planning Association of Malawi (FPAM) recognizes this and has worked closely with one trailblazing traditional leader over the past decade. Senior Chief Theresa Kachindamoto from Dedza District has taken on the advancement of girls in her area by passing radical bylaws and changing the standards within her community. Over the past three years, Chief Katchindamoto has annulled nearly 850 child marriages and has worked with parents to ensure girls go to school.
According to UNICEF, girls with no education are twice as likely to acquire HIV as compared to girls with at least six years of schooling.
As Innocencia says, it’s “harder for girls in the community” but a lot depends on what she calls, “the culture of the community.” Innocencia now worries about her 11-year-old sister: “I don’t want her to be taken advantage of.”
Gabriel Mateyu, district program manager from Dignitas, the organization that supports Tisungane teen club for HIV positive youth, explains, “Tradition is very important. It’s a part of life. You have to know the good part from the bad part of tradition—and strengthen the good part.”
This story originally appeared as an Untold Story on the Pulitzer Center website on September 21, 2016. See: http://pulitzercenter.org/reporting/tradition-changes-fate-girls-malawi
Young Heroes Living with HIV in Malawi
As the world sprints to end AIDS and the spotlight shines on successful prevention of mother-to-child HIV transmission programs, young people born with the disease—but never told by their guardians—are coming to terms with the disease and living fulfilling lives. Click on each image to read the stories of these young heroes in Malawi. Images by Jennifer Stephens.
To read more from Jennifer Stephens: The Youth of Malawi
How Rwanda, Once Torn by Genocide, Became a Global Anti-AIDS Leader
Now that an aggressive ARV regimen can keep HIV/AIDS at bay for decades, children and adolescents born with the virus have reason for hope. Countries like Malawi are working hard to convince these young people to stay on HIV regimens. The NewsHour team, Jon Cohen, William Brangham, and Jason Kane, visited another country with a high HIV rate, Rwanda, to see how its youngest HIV patients are faring.
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For the following photo essay, Misha Friedman traveled to Ukraine, which for the past decade has had one of the fastest growing HIV/AIDS epidemics in the world. Prevalence in eastern Ukraine is much higher than rates in the rest of the country. Over 6,000 people living with HIV in separatist-controlled Donbass struggle with a shortage of medicine and doctors. The total number of those living with HIV could be much higher.
To make matters in Donbass worse, pro-Russian separatists have banned most international medical organizations from providing assistance and gathering accurate information about the situation.
In the territory controlled by Ukraine’s government, the situation is complicated by the large number of internally displaced people and thousands of demobilized soldiers returning to their families with PTSD (post-traumatic stress disorder). In 2015 there was a significant increase in violence, affecting a large number of women.
Heavy fighting ended over a year ago, but displaced women and children with HIV have continued to fight in search of shelter and permanent employment. Families where both or one parent is living with HIV suffer the most due to discrimination and stigmatization.
The images and text for this chapter were taken from photo essays by Misha Friedman, first published by Hromadske, PRI’s The World, and Radio Free Europe from May to July 2016.
To read more from Misha Friedman: Ukraine’s Internally Displaced, Two Years On
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The first sanitariums were established in the 19th century for patients with tuberculosis and other long-term illnesses. They offered patients healthy food, fitness regimens, and exposure to cleaner air in places such as the Swiss Alps or the Arizona desert, all in the hope that residents would recuperate.
The Cuban government had a different priority when it established its network of HIV/AIDS sanitariums in the 1980s. Although patients received antiretroviral therapy (ARTs) there, the 14 hospitals mainly served to seal off HIV positive Cubans for life.
In January 2016, Rebecca Sananes met one of these patients, Eduardo Martinez, in Havana. When Martinez was first sent to the sanitarium, he felt dejected. But as the self-proclaimed “Christian Dior of Cuba,” he soon found a creative coping mechanism—and started a unique subculture among his fellow patients.
Love, Loss, and Beauty Pageants: Inside a Cuban HIV Sanitarium
On a terrace outside his Havana apartment, Eduardo Martinez nurtures a small schefflera tree. On a Friday afternoon in January, he looks up at its leaves fondly.
“I got it when I was in the sanitarium. I put it in my living room and it began to grow until it reached the ceiling,” he says in Spanish through a translator.
When he left the sanitarium in 1996, he took a clipping from the plant. “It was so small,” he says.
“But it has turned into this forest that you have here—so this is a memento from that time.”
The early years of AIDS in Cuba, after the virus arrived on the island in 1986, was a complicated time. The Cuban government created a system of 14 hospitals and living facilities around Cuba, called sanitariums, where anybody who tested positive for HIV was sent for life. Martinez became one of them in 1991 and is one of the only people of his sanitarium generation still living.
People had mixed feelings about the system. Critics called them prisons; supporters credited them for helping to control the epidemic. Martinez calls the sanitariums a double-edged sword.
“The purpose of the sanitarium was to stop the disease from being spread,” he says, “which was unsuccessful, because the disease continued to propagate.”
Only one sanitarium remains—the first one to open, the one Martinez called home for five years in Santiago de Las Vegas outside of Havana. Now, the sanitarium is more hospital than quarantine, a voluntary clinic for those who need extensive HIV care.
Martinez has lived with HIV for 25 years. “As compared to before, HIV today is like a cold,” he says.
Today, Martinez puts on extravagant fashion shows and performances at the Tropicana—one of Havana’s most famous nightclubs—for audiences, including the Central Committee of the Communist Party of Cuba.
When he’s on stage, he transforms himself into a towering blonde woman named Samantha. But back in 1991, Martinez thought he was at the end of his career—and possibly his life.
He had been a well-known designer, creating costumes for popular television shows and calling himself the “Christian Dior of Cuba.” At the height of his career, on one of his costume tours, he had an affair with a dancer.
“He didn’t know that he had HIV,” Martinez says. “And when the tour was finished, I came back to Havana and some months thereafter, I began to feel bad.”
A doctor-friend sent him for an AIDS test, which came back positive. But unlike many Cubans at the time, Martinez had what he remembers as a good life: a booming career and close ties to family, especially his parents. For him, being sent to the sanitarium would mean this lifestyle was over. For a full year, he kept the diagnosis secret as the doctor waited for room in a sanitarium. Finally, one day came a knock on his door.
“I didn’t want to go, but they would come for you and take you by force,” he says. At the sanitarium, patients were interrogated by officials and expected to reveal their sexual partners, so they too could be tested for HIV.
At the time, some people saw the sanitariums as a place of refuge amid widespread homophobia and poverty. The living quarters and health services were funded by the National AIDS Commission, the government’s program to quash the epidemic.
Martinez had the rare luxury of living in one of the few residences in Cuba that had air conditioning and a steady food supply. Despite that, he fell into depression and spent a month living in a psychiatric ward at the sanitarium.
“At first, it was very sad for me, because I didn’t understand why I was infected and why I had to go be interned in that place,” he says. “And on top of this, that was killing my career. I was at the top of stardom at that moment. I went on a hunger strike when I arrived.”
Soon, however, he reconciled himself to the idea that the sanitarium was his whole world for the foreseeable future. “I couldn’t just lie down there and wait for death,” he says. “I was an active professional. And I waged a revolution there.”
So, tucked away from the rest of the world, “Samantha” was born.
“That was where I transformed myself for the first time” he says in his current Havana apartment filled with tiaras, blonde wigs and trophies from beauty pageants. “I needed a model in order to continue producing designs, and I just used myself as a model.”
But Martinez did not just transform himself. He took his fellow patients—including the man who designed the covers for then-President Fidel Castro’s books—and built a community of artists devoted to self-expression.
Martinez began to change his attitude about the sanitarium: It was no longer his prison, but what he called his “big house.”
“I used everybody around me, I made fashion shows, I made a movie theater, I created theater, so I involved everybody around me,” he says.
In many ways, he became a resident therapist, he says: “The patients were needing a lot of entertainment, distraction.”
He was even provided a budget and facilities from the sanitarium in order to put on his shows. In his opinion, he came to discover that if he “kept the mind of the patients busy, the immune system wouldn’t be depressed,” he says.
And while the gay community outside the sanitarium struggled against violence and discrimination, the sanitarium became a haven. Martinez praises the sanitarium doctors as open-minded: “If they didn’t have an open mind, they would have to, because there were many gay people there,” he says.
“What I managed to do in that place, I wouldn’t have been able to do on the street outside,” he adds.
Like the rest of the world, Cuba sought cures for HIV, and many patients in the sanitariums became voluntary test subjects for potential cures. Martinez was slated to be one of them before he opted out of a controversial experiment.
“It consisted of heating the blood in order to see if the virus would die,” he explains. “But the thing is that with this, not only would the virus die, but [it would destroy the proteins in the blood].” The night before he was slated to go through with the test, he decided against it—a decision he now sees as a narrow escape. “The people who participated in it, all of them died,” he says.
Martinez, who has a spiritual air about him, calls his survival fate.
By 1995, the government could no longer afford to house HIV patients for life. With the fall of the USSR, Cuba stopped receiving funding from its communist benefactor and faced massive budget cuts throughout the country and finally to the public health system.
Some patients left on their own volition, and eventually the remaining patients were kicked out. Martinez was one of the first patients to be offered his freedom, but just as it was difficult to go into quarantined life, it was hard to come out.
“I refused to leave because I said I was too committed to the community inside the sanitarium,” he says.
But by 1996, he knew it was time to go. Despite the homophobia and discrimination that still persisted against HIV positive people in Cuba, Martinez persevered and built what he now calls his second career—for which he partly credits the sanitarium.
“That’s where Samantha started,” he says with a proud smile. “I was the first one who engaged in doing very daring things. Never before had there been cross-gender performers at Tropicana.”
These days, when Martinez thinks of the sanitarium and the friends he made there, he cries. “We would dream [of having a] theater to do our trans shows,” he says. “We never thought it would be possible.”
Smiling, he adds, “I’m happy to have been able to reach this moment.”
This article was originally published by WBUR and NPR’s Goats and Soda on March 26, 2016. See: http://www.npr.org/sections/goatsandsoda/2016/03/26/471765424/love-loss-and-beauty-pageants-inside-a-cuban-hiv-sanitarium
To read more from Rebecca Sananes: Cuba’s Headstart on Finding a Cure for AIDS
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In the early 1980s, doctors noticed that an unusual sickness, known as Kaposi’s sarcoma, was spreading rapidly among gay men in New York and San Francisco. The spread of this and other rarely seen diseases led them to conclude that the patients’ immune systems had been compromised.
It is now known that Kaposi’s sarcoma is one of several “opportunistic infections” that take advantage of an AIDS victim’s ruined immune system. Aditi Kantipuly traveled to India to see how another such infection had impacted that country’s HIV patients. This illness, known as CMV retinitis, is caused by the same family of viruses that cause cold sores. With no antibodies to fight them off, these germs can spread to the eyes and cause blindness.
As with many of the other AIDS-related issues that Pulitzer Center grantees have covered, fighting CMV retinitis requires a reliable, easily accessible health care system. In strained, underfunded hospitals—like the ones Kantipuly visited in India—doctors face the grim choice of deciding who to save. As one of these doctors told her, “I have several patients with CMV; Whose sight should I save?”
Stigma: The Blindspot of India’s HIV Epidemic
The year 2016 marks the 30th anniversary of the first known case of HIV in India. While the number of new HIV infections in India declined by 25 percent from 2005 to 2013, the stigma of the disease remains strong.
Vidya, an HIV positive sex worker seeking care at a government HIV center in Madurai, said, “When I go to the doctor, they don’t even touch me. What is the point in going if they can’t do a proper exam?”
When individuals with HIV do not seek proper medical care, their immunity becomes compromised leaving them vulnerable to developing infections such as CMV retinitis, which can lead to irreversible blindness and increase the risk of an AIDS-related death.
In 1981, the first cases of AIDS in the U.S. were discovered in gay men in San Francisco. Many gay men diagnosed with advanced cases were unable to work or afford the growing cost of treatment. Small networks within the gay community created a potent public health response with individuals speaking out across the country.
Ryan White, a 13-year-old boy, also helped change the public perception of HIV. He was a hemophiliac who contracted HIV through a blood transfusion. His testimony made HIV more “acceptable,” leading to stronger and more comprehensive care infrastructures. Today, in the United States, virtually 95 percent of CMV cases have disappeared since the introduction of antiretroviral therapy to treat HIV patients.
In India, however, the situation is different.
Mansi, a widow, had contracted HIV from her husband and was left severely visually impaired from untreated CMV retinitis. After her husband’s death, her in-laws neglected to take care of her. Mansi traveled over 300 kilometers to reach Gujarat, Ahmedabad, to get a second opinion from Dr. Alay Banker, a famous eye surgeon who has treated many patients with CMV retinitis.
“I was so sick. I begged my father-in-law to take me to the doctor,” she said.
Although it is customary in India for women to be accompanied by a member of the husband’s family on visits to the doctor, Mansi’s father-in-law replied, “What does it matter anyway? You are HIV positive. You are going to die soon. Why should we waste money on you?”
Mansi and her two young children now live with Mansi’s mother, sister and brother-in-law. “Even my mother thinks I am a burden to them because I do not bring any financial income to the house. This is still the better of the two evils.”
HIV has left Mansi a widow not only by her husband but also by society.
From the birth of India’s AIDS response in 1992, the National Control AIDS Organization (NACO) has always prioritized vulnerable populations such as sex workers, injection drug users, and the transgender community. Yet, unlike the gay community in the U.S., they have had little success in negotiating access to care. In India, the stigma of HIV remains fierce. There are no Indian public figures such as Magic Johnson or Charlie Sheen who have made HIV more acceptable. Small “pocket epidemics” continue to emerge and several states in India have disproportionately high prevalence rates, reaching as high as 30 percent in some communities.
Currently, the government has no screening programs for CMV retinitis, but a few such programs have emerged in the private sector at hospitals such as YRG Care, part of the Voluntary Health Systems, in Chennai, as well as through HIV clinics such as one in Manipur run by Doctors Without Borders. Although screening for CMV retinitis usually requires trained eye specialists, the clinic in Manipur has implemented a program in which general physicians are trained to screen all patients for CMV retinitis. YRG Care engages in systematic collaboration with a team of eye specialists, at Sankara Nethralaya, an eye hospital, where all patients with eye problems are referred.
While these programs have undoubtedly saved the sight of many patients, an effective approach to combating the epidemic must integrate social, cultural, and economic perspectives. The HIV epidemic cannot be considered solely from a medical perspective
(Vidya and Mansi’s last names have been withheld for to maintain their privacy.)
This article first appeared as an Untold Story on the Pulitzer Center website on June 13, 2016. See: http://pulitzercenter.org/reporting/stigma-blindspot-indias-hiv-epidemic
Out of Sight, Out of Mind: Exploring India’s HIV Epidemic
“Her last days were spent not only in despair but also in darkness,” explained Devi, now the caregiver for Revathy’s three young children. Revathy, a young, 34 year-old widow, dies from AIDS after being diagnosed with cytomegalovirus retinitis, two years ago.
Today in India, the eyesight of individuals living with advanced HIV/AIDS is threatened by a pathogen that is able to infiltrate the eye. Known as cytomegalovirus retinitis (CMV retinitis or CMV), it is the leading cause of more than 90 percent of blindness in HIV patients. CMV retinitis comes from the same family of infections that are responsible for producing a common cold sore. Although CMV can be treated, the high cost is prohibitive for many patients.
The advent of effective medications, such as antiretroviral therapy (ART), have made it possible for people living with HIV/AIDS to live a normal lifespan, transforming the illness, once thought of as terminal, into a manageable chronic condition akin to diabetes or high blood pressure.
Nonetheless, without ART medications, the HIV virus places stress on the immune system, rendering the body unable to defend against certain pathogens such as CMV. These pathogens are considered “opportunistic” because they can hijack the immune system, entering into places such as the eye and leading to devastating symptoms including blindness.
Dr. David Heiden, the medical director of the AIDS Eye Initiative at the SEVA Foundation, says, “Most deaths in patients with HIV/AIDS are ‘multifactorial’—at the time of death the patient commonly is suffering from multiple opportunistic infections.” Not only is CMV a major cause of blindness, but it can also lead to death in many cases.
Limited access to antiretroviral therapy is one of the major factors that places individuals with HIV/AIDS at risk of developing CMV. According to the UNAIDS 2015 Gap Report, India has the third highest incidence of HIV cases in the world, but only 30 percent of eligible HIV positive population living in India are able to access antiretroviral therapy.
Prathap, a 41-year-old daily wage laborer with HIV in Madurai who has received ART therapy for the last seven years, reported, “The situation is getting worse. At times, I am given only a week’s supply and have to come back to the clinic when they call to get the rest of the supply. This means I have to take an extra day off work. It is a loss of income for me but I have to stay alive for my children, so I try my best not to miss the pills.”
When asked why he did not see a private doctor, Prathap responded, “I don’t have the luxury. The treatment at the government center is free and I make only 400 rupees (around $6) a day.”
India’s first cases of HIV were identified by Dr. Suniti Solomon in 1985 in a group of female sex workers in Chennai. Despite great resistance in late 1980s, when HIV was viewed in India as a “Western disease” and a by-product of promiscuity that was incompatible with the morality of Indian culture, Solomon’s work greatly influenced the Indian government and was instrumental in the creation of the National AIDS Control Organization (NACO).
To date, NACO has rolled out four different phases to deal with the HIV epidemic, with each phase having a set of unique goals and copious amounts of funding from international agencies such as the World Bank to allow for high-caliber interventions throughout the country.
Since the deployment of the most recent and current phase, Phase IV, in 2012, there has been a silent shift towards apathy and indifference due to the absence of external donors. Although NACO plans were conceived with the understanding that the role of donors would gradually decrease and the Indian government would manage the program on its own, the rocky transition has had significant implications for the care and management of HIV positive people nationwide.
In 2012, one of the biggest donors, the Global Fund to Fight AIDS, Tuberculosis and Malaria (GFATM), which had pledged $187 million, pulled out after the government was unable to provide sufficient detail about how the money was being used.
Most recently, Prime Minister Modi cut the 2015-16 central AIDS budget by 22 percent and asked state governments to fill the gap, resulting in havoc at numerous antiretroviral therapy centers. A senior counselor at Tambaram Sanatorium, the government antiretroviral therapy center and the largest AIDS care center in India, said that there have been drug shortages and uncertainty about when supplies would be replenished. “At times, we’ve had to request another district’s stock in order to meet shortages.”
At a metropolitan government hospital, the head of operations voiced similar frustrations after waiting two weeks to obtain the medication, known as Valganciclovir, to treat CMV: “We are provided with protocols on how to treat opportunistic infections. We see patients coming with CMV, yet we have no resources. The central government does not provide us with the medication to treat CMV, like they do with antiretroviral therapy. It is up to the discretion of the individual state programs to obtain medications.” He ordered Valganciclovir from another government center, situated within the distance of a three-hour drive, but was only able to obtain a three-week stock for patient (typical treatment must extend three months). “I have several patients with CMV: Whose sight should I save?” he asked.
Paradoxically, while India struggles with drug shortages, it is also one of the major pharmaceutical hubs of the developing world because of its ability to produce affordable generic medications, including antiretroviral therapies. According to a recent report by Doctors Without Borders, “More than 80 percent of HIV medicines used to treat 6.6 million patients in developing countries come from Indian producers.” In 2001, Cipla cut costs by 97 percent, making it possible to deploy ART medication free of cost to HIV positive people living in India by 2004. Yet, only a third of eligible HIV positive individuals have been able to access this medication.
Another Indian pharmaceutical company, Rambaxi, produces a generic version of the crucial anti-CMV drug Valganciclovir, yet the price still remains largely out of reach. If India has the capacity to produce medications, why are there acute shortages at government-run antiretroviral therapy centers?
The government’s disorganization and inability to distribute funds appropriately have comprised the quality of prevention programs, leading to a nationwide scarcity of supplies that are essential to protect not only the vision but also the lives of HIV-positive individuals.
Today, close to quarter of India’s population lives on a daily income of less than the price of a cup of Starbucks coffee. As a loss of income may mean a day without food, many HIV-positive people cannot even afford to come to the free government clinics. When patients miss doses, the virus continues to spread, and drug resistance and reliance on second-line ART therapy grows. As a result, patients become more vulnerable to opportunistic infections. Although the National AIDS Control Organization website states that second-line therapy is provided for free, this decision is made on a case-by-case basis.
Dr. N. Kumarswamy, chief medical officer at YRG Care, an HIV/AIDS organization at the Voluntary Health Systems Hospital in Chennai, says that it has taken months for some patients to procure second-line treatment. This situation increases the incidence of opportunistic infections such as CMV. Acquiring this infection is a known risk factor for an AIDS-related death; the subsequent result is individuals with HIV/AIDS who spend their last days without sight.
Because of limited diagnostic and therapeutic resources for opportunistic infections such as CMV retinitis, combined with the political landscape of the government, unofficial sources suggest that the incidence of CMV will continue to rise in India until ART therapy will become freely accessible to all patients. While the Indian government tracks other opportunistic infections like tuberculosis, they do not have a system for tracking CMV. As such, the government lacks the crucial epidemiological data that would enable them to track its spread and support targeted interventions to prevent blindness.
The end result is that antiretroviral therapy centers are overcrowded and understaffed. Patients are burdened by transportation costs and lost income. They are left weak and frightened.
This article was adapted from one published by Global Health NOW on July 3, 2016. The original version is at: http://www.globalhealthnow.org/2016-07/out-sight-out-mind-exploring-indias-hiv-epidemic
To read more from Aditi Kantipuly: Turning a Blind Eye on India’s HIV Epidemic
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Over 81 percent of Filipinos identify as Catholic, a fact reflected in their country’s social policies. Abortion remains illegal in all circumstances, and the Philippines is the only country in the world with no legalized divorce process. Freelance journalist Ana Santos has received several Pulitzer Center grants to cover the impact of these policies and other gender-related issues.
In her reporting on HIV/AIDS in the Philippines, Santos found that mainstream Catholic attitudes towards sexuality have hindered the country’s response to a small, but fast-growing, HIV epidemic. Under the country’s HIV/AIDS Prevention Law of 1998, minors cannot receive free condoms or HIV testing; neither sex education nor antiretroviral therapy (ART) programs have kept up with the spread of the epidemic. Meanwhile, deep-seated prejudices discourage those most at risk—drug users and homosexuals—from seeking help.
Santos found that activists are pressuring the government to revise the HIV/AIDS Prevention Law, and a new sex-ed program is in development. Until these initiatives come to fruition, the war against AIDS in the Philippines will mostly be waged by kind, courageous individuals: a mother willing to accompany her gay teenage son to HIV testing, or a Catholic monk who hands out clean needles and condoms in violation of his church’s teachings.
Efforts like these have saved lives, but they fail to make up for a lack of state support or dislodge the stigma of the disease. As a result, those most at risk see little reason for optimism.
In her first article Santos introduces us to one of these Filipinos, Jayce Perlas—he is gay and has lost many of his friends to the disease. Photographs are by Veejay Villafranca.
Dying of AIDS and Shame in the Philippines
Ana P. Santos
The Facebook posts were becoming so common that it no longer surprised Jayce Perlas, but it still made him sad. Friends were posting messages about the passing of another friend who was “gone too soon.”
By now, the updates took on a certain template. The deceased was usually male, in his 20s or 30s, openly or secretly gay, his sudden demise simply explained as “hard-core pneumonia” or tuberculosis—infections that could normally be treated by antibiotics.
The virtual but connected universe of Facebook provided a safe haven for final good-byes, an outlet for grief that could not be expressed at hushed and hurried funerals.
At its worst, Perlas, an entrepreneur, has read about three deaths in one week. At the funerals of close friends, he says, there is always a profound grief and sadness, but there is something else, too.
“In every funeral I have attended, the air is thick with the unspoken thought: Could it be one of us next?”
San Francisco in the 80s
The Philippines is one of the three countries in the Asia-Pacific Region described as having an “expanding epidemic.” In 2000, one new HIV case every three days was reported. By the end of 2013, that number had increased to one new HIV case every two hours.
To those who witnessed it and still remember, the current situation is reminiscent of San Francisco in the 1980s when mostly gay men got infected and began dying due to what was later identified as AIDS.
HIV activist Tony Benfield, 53, still remembers the early days of AIDS. HIV had yet to be discovered as its cause and men were dying from what was then called the “gay cancer.”
“I lost many friends then. It offends and angers me that I continue to lose friends today,” said Benfield, shaking in outrage.
As a trained HIV counselor at an HIV testing facility subsidized by the Department of Health (DOH), Chris Lagman sees many cases and many stages of HIV. Some come in to get tested for the first time while some who get tested are already showing early signs of opportunistic infections.
Like Perlas, Lagman sees Facebook posts about death of friends and acquaintances. The reasons are cryptic, but from the cases he sees in the clinic, Lagman senses it is most likely a death caused by HIV-related complications—a death that could have been prevented with early diagnosis and treatment.
Since 1984, when the Philippines reported its first case of HIV, the island nation of more than 100 million has always been a low-incidence country. Less than one percent of its general population was infected with HIV.
Around 2009, things began to change. The main mode of transmission of the virus shifted to men having sex with men (MSM), and new infections among a small group of injecting drug users were reported.
More than 25,000 new HIV infections—around 85 percent of the total 30,356 recorded infections in the country—were reported from 2010-2015. An estimated 81 percent of total HIV infections cluster around MSM, with more than half of the cases belonging to the 25-34 age group.
Data released by the DOH in November 2015 showed that HIV infections increased by close to 800 percent in the 15–24 age group from 2001 to 2015.
The DOH forecasts that total HIV infections could reach 133,000 by 2022 if the current trend continues.
“To reverse the increase in infections, we need to increase condom use and bring it up to the levels of 80 percent. We need to get people tested and get them on treatment,” said Dr. Genesis Samonte, DOH HIV surveillance head.
Increasing condom use among MSM from its current level of 44 percent will require addressing social, religious and legal obstacles, starting with updating the HIV/AIDS Prevention Law of 1998, which prohibits minors from getting an HIV test without parental consent, hampering early diagnosis and subsequent treatment.
“We need to allow young people to access HIV testing. We need harm reduction programs [for people who inject drugs]. We need to overhaul our legal framework on HIV,” said Jonas Bagas, an HIV activist who has been lobbying for amendments to the HIV law.
“The current law is designed for general population epidemics. Awareness activities are not targeted to inform important sub-populations about prevention and where they could get treatment,” argued Bagas.
The proposed amendments to the HIV law include eliminating the need for parental consent for 15–17-year-olds to get an HIV test, strengthening grievance mechanisms for cases of discrimination and allocating more of the budget to information and education drives.
The DOH HIV and AIDS Unit has about 600 million pesos ($13 million) for HIV treatment and prevention from this year’s budget. About 400 million pesos of that will go to providing free antiretroviral (ART) treatment to the more than 12,000 Filipinos who are currently enrolled in the program. The rest will go to purchasing condoms and testing kits, and information materials.
Samonte admits it is not enough and part of the DOH’s interventions will be to find ways to augment this budget.
Stigma and shame
The DOH HIV/AIDS Registry shows 415 AIDS-related deaths from January to November 2015. But Samonte recognizes that this number is grossly understated as many deaths are quietly passed off as pneumonia or meningitis. “Some go undiagnosed,” said Samonte.
“The Philippines could look like San Francisco in the ‘80s, during the height of the AIDS scare. But back then, life-saving ARV treatment was not available. Now, ARV treatment is available and free. No one should have to die from HIV-related infections in 2016.”
“Back then, we called it what it was. ‘He died of AIDS,’ we would say. Here, they say, ‘Oh, it was hard-core pneumonia.’”
But some still do. Kate Leyritana, a doctor at an HIV testing clinic, recalls one incident where she lost one of her patients just a few months after diagnosis. “His mother only knew her son had HIV in his last days. She asked me, ‘Why am I the last to know? I am his mother. I should be the first one he can talk to.’ I had no words.”
The mother still texts Leyritana each December on the anniversary of her son’s 2012 death to say she misses him.
This article was first published by DW on May 30, 2016. See http://www.dw.com/en/dying-of-shame-and-aids-in-the-philippines/a-19292896
The City at the Heart of the Philippines’s HIV Epidemic
Ana P. Santos
CEBU CITY, Philippines—The dealer’s hands move quickly as he dispenses small vials from the waistband of his shorts, his front pockets bulging from the weight of coins and small bills. From his back pocket, he hands out syringes or collects them. Occasionally, he uses the t-shirt slung over his shoulder to wipe away the beads of sweat that made his goatee glisten.
The shanty where he works—a small room full to bursting with people—is home to one of Cebu’s many “shooting galleries,” a place where people gather to purchase and inject the narcotic pain reliever Nubain. At this particular gallery, a small glass capsule containing 1 mL goes for Php 150, or around $3. For individuals on a tighter budget, the dealer can squeeze out a single squirt for Php 20 ($0.50). Those who bring their own supply of the drug only have to pay a fee to use the shooting gallery, a charge of Php5-Php10 ($0.10 - $0.20).
An unused needle sells for another Php20 ($0.50), but few people who came through the shooting gallery chose to purchase one—the dealer also supplies free “service needles,” new and slightly used syringes available to any customer. It’s common for groups of customers to split the cost of a vial of Nubain between them and share a service needle as they use it. The Philippine Department of Health (DOH) says that the typical shooting gallery has three to five service needles on rotation at a time, each of which can be used four to six times before it gets too blunt. According to Genesis Samonte, the head of the department’s HIV surveillance unit, one shared needle can infect four to six people with HIV or hepatitis C.
But HIV prevention is a difficult undertaking in Cebu City, which has plenty of places to go shoot up on Nubain or “milkshake” (an injectable combination of Nubain and crack cocaine) but few places to access a clean needle.
In 2014, the Cebu HIV/AIDS Registry reported that 74 percent of the city’s 1,366 recorded HIV infections were due to needle-sharing. The DOH estimates that more than 50 percent of the roughly 6,000 intravenous-drug users in Cebu and its neighboring cities are positive for HIV. Needle disposal has become a public-health problem: In some areas, used syringes dot the streets.
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Since the Philippines’s first reported case of HIV in 1984, the country has remained “low-incidence,” meaning less than one percent of the population is infected with HIV. Even with low condom use and a sizable population of citizens who work overseas—both factors that typically contribute to a higher rate of HIV—the health department recorded only 2,410 new HIV infections between 1984 and 2005.
As a result, HIV was low on the Philippines’s list of public-health priorities during the earliest years of the virus, as the government focused its efforts and funding on other infectious diseases like tuberculosis and malaria. It wasn’t until 1998 that the country passed the Philippine AIDS Prevention and Control Act, creating educational programs about the disease and funding prevention efforts.
The disease continued to spread slowly in the following years, with the rate of new infections increasing by about 10 percent each year. But in 2009, public-health authorities saw a spike: Infection rates jumped 58 percent from the previous year. There was a similarly dramatic increase the next year, and again the year after that. In October 2015, the DOH’s HIV/AIDS registry counted just over 29,000 cases in the country since 1984—with more than 24,000 of them reported after 2010.
“The rate of infection in the last five years has eclipsed the rate of infection over of the last 30 years of the virus,” says Zimmbodilion Mosende, the strategic information adviser for the UNAIDS office in the Philippines.
The registry also reported a total of 1,359 deaths since 1984, but because of the stigma of HIV, many public-health workers believe the true figure is much higher.
Although most of the country’s new infections come from sexual contact, current policies can make it difficult for health workers to promote safe sex: testing and contraceptives are off-limits to minors, for example, unless they have parental consent.
And in Cebu City, where, the primary mode of transmission is intravenous drug use, other laws have made it just as difficult to develop prevention programs targeted towards users. The Dangerous Drugs Act was amended in 2009 to criminalize the possession and distribution of drug paraphernalia like syringes. As a result, Cebu’s local public-health organizations had to discontinue their needle-exchange programs; the city also passed an ordinance limiting the sales of needles and syringes without a prescription.
The following year, HIV cases among injecting drug users in Cebu jumped from less than 1 percent to 53 percent.
The United Nations defines a “concentrated epidemic” as an area where infection rates are higher than 5 percent of the population. Surveillance data released by the health department in November 2015 showed that Cebu was one of eight Philippine cities that breached this percent threshold.
“The 5-percent prevalence rate is like a tipping point,” Samonte explains. “The moment you reach 5 percent, you reach a critical mass of people who can infect others and the epidemic will rapidly spread.”
But as public-health officials call for aggressive needle-exchange programs in Cebu, some local government officials continue to fiercely oppose them.
“The answer to this problem is not distributing clean needles,” says Alice Utlang, the executive director of the Cebu City Office of Substance Abuse Prevention (COSAP). “The answer is rehabilitation.”
But advocates say rehabilitation isn’t enough to combat what’s becoming an urgent problem. Cebu only has two public drug-rehabilitation centers, both of which are already crowded, and the cost of treatment puts their services out of reach for many people at risk for HIV.
“Our objective is harm reduction. While we are weaning them off the drugs, we can stop the spread of the virus through a needle exchange program,” says Ilya Tac-An, the head of the Cebu City’s STI/HIV Detection Unit.
In the meantime, Tac-An and her team make do with their current limitations. They’ve enlisted former drug users to lead education programs that discourage needle sharing and teach both users and dealers how to clean used needles using bleach and water.
It’s not even 8 am, and the waiting area of Cebu’s Glory Reborn Birthing Clinic is abuzz. Women carrying their newborns close to their chest — some with a toddler snoozing on their shoulder — chat with pregnant ladies caressing their rounded bellies.
The city’s drug problem is creating a sort of ripple effect, increasing the risk of infection for non-IV-drug users as well.
Over at Cebu City’s Vicente Sotto Hospital, which offers free HIV testing and treatment, Chamberlain Agtuca, is worried: In recent years, he’s seen a growing number of women come into his clinic for treatment, most of them pregnant.
“Before, we had maybe one case per year—if any at all,” Agtuca says. But “since the start of the year, we have had 10 pregnant women test positive for HIV.”
“Many of these (pregnant) women do not have an HIV risk profile. They are not engaged in sex work nor do they inject drugs,” he adds. But many of them received the virus from sexual partners who were infected via needle-sharing. (UNAIDS estimates that 50 million women in Asia who are in long-term monogamous relationships are at risk for HIV infection through intimate-partner transmission.)
“We did not see this coming. But when more male injecting-drug users get infected, they will infect their female partners,” Samonte says. “The [drug use]-HIV issue does not end with the users.”
This article was first published by The Atlantic on January 5, 2016. See http://www.theatlantic.com/health/archive/2016/01/cebu-city-philippines-hiv-drugs/422700/
The Philippines: Curbing HIV with Empathy, not Bigotry
Ana P. Santos
Brother Paul Bongcaras: The Catholic monk who hands out condoms
Brother Paul gently patted the young woman’s arm in a rhythmic, wordless lullaby, soothing her as blood flowed from the drip bag to her veins. She wailed that the cross tattoo on her leg was painful and itchy.
He had last seen the 28-year-old woman, whom we’ll call Lilibeth, during his nightly walks in Cebu City’s shantytowns and “shooting galleries.” Almost every night for more than 30 years, the 69-year-old monk has been meeting with those most condemned in the Philippines’ Catholic society: the sex workers, the injecting drug users, the dealers, and the pimps. He talks with them without judgment, giving them condoms and crackers. Outside the shantytown, he advocates on their behalf.
Lilibeth’s friends think of her as beautiful and kind-hearted. She was the freelance sex worker who never ran out of clients because of her looks—and was never short of friends because of her generosity and easy smile. It was common for Lilibeth to share earnings with friends in need. In the hospital, it was hard to imagine the same woman had become a fragile figure with stick-like limbs and ashen pallor.
She was in that state when she went to see a doctor who sent her home saying that it was “nothing serious.” She begged friends to find Brother Paul, knowing he was the only one who could help her.
Brother Paul found a doctor at the Vicente Sotto Hospital, an HIV treatment hub, and personally explained Lilibeth’s situation. It was because of his efforts that she was back in the hospital, getting the attention she needed. But there was little left to do now besides alleviate her pain. Speaking was difficult, but Lilibeth removed her oxygen mask to tell Brother Paul how thankful she was that he was there, along with her boyfriend and her best friend.
Officially, nearly 500 Filipinos died of HIV-related causes in 2015. But the [country’s] health department acknowledges that many deaths go unreported or are quietly passed off as meningitis or pneumonia.
Over the years, Brother Paul has realized the possible reason for the euphemism. He recalled the story of one deceased woman who was declined a funeral mass. They did not give a specific reason for the snub, but Brother Paul can’t help but think that her death certificate, which stated AIDS as the cause of death, had something to do with it. Brother Paul found a way to have burial rites at the cemetery before she was laid to rest. For the woman’s sister and the three children she left behind, it was a final tribute of love.
It saddens him that the Catholic Church has remained obstinate on programs like condom distribution and needle exchange programs. To Brother Paul and other HIV advocates, these policies have directly contributed to Cebu City’s exponential increase in HIV infection rates; among injecting drug users, rates skyrocketed from less than one percent in 2009 to more than 50 percent the following year. On his walks, he sees opiates and sex being bought and sold for as little as 20 Philippine pesos ($0.50) and drug users sharing “service needles.”
In response, Brother Paul is working with several NGOs and the Cebu City Health Office to build an informal care chain where information is shared and resources are pooled to provide whatever is needed: shelter for those disowned by family, formula milk for babies of HIV-positive mothers, or simply emotional support.
While that remains to be decided by the hierarchy, Brother Paul will continue to comb the streets. He will hand out condoms and free advice — but what he is really offering is acceptance.
Hilary Overton: Caring for the Pregnant and the Unborn
It’s not even 8 am, and the waiting area of Cebu’s Glory Reborn Birthing Clinic is abuzz. Women carrying their newborns close to their chest — some with a toddler snoozing on their shoulder — chat with pregnant ladies caressing their rounded bellies.
Hilary Overton walks in and cheerfully greets them “good morning,” her perfect Cebuano accent belying her blond hair and blue eyes. She calls some of the women by name and casually asks about their kids and husband, like old friends picking up an earlier conversation.
Hilary set up Glory Reborn in 2003, after her midwifery training led her to the Philippines. While working with Brother Paul, Hilary was exposed to the needs of women from the shantytowns, garbage dumpsites and brothels — and their vulnerability to HIV.
In 2008, around the time Cebu’s health department first noticed an uptick in HIV infections among male injecting drug users, Glory Reborn started offering STI screening and HIV testing to their predominantly female clients.
“We weren’t sure, but we thought that these women might be vulnerable to getting infected,” said Hilary. Of the patients who agreed to testing, all turned out negative — until 2011, when a woman who was pregnant and tested positive at the city health clinic came to Glory Reborn for help.
As a birthing clinic, Glory Reborn was not certified for providing C-sections or antiretroviral drug treatment (ARV) recommended to prevent mother-to-child transmission of HIV. Hilary instead referred the woman to Cebu Plus, an NGO that offers counseling and treatment.
And then another woman followed. And another.
A pattern emerged among these women. They would come during the later stages of their pregnancy with very little knowledge about HIV. They were all scared and confused after learning their test results. Also, most of these women did not typically fit the HIV risk profile; they were not engaged in sex work or shooting drugs. But their partners were.
Glory Reborn holds their hand through the process. A social worker will offer to go with the patient to Cebu Plus, who will immediately begin the procedures to help prevent mother-to-child transmission: ARV treatment and counseling for the mother, prenatal checkups, and scheduling of the C-section.
Throughout all this, Hilary and her team remain in the background, ready to help at any time. “We want to be with them on this journey,” she said. “Once they are our patient, they are our patient for life.”
The journey has taken her on an entire life cycle with her clients. Glory Reborn has sponsored numerous C-section deliveries and everything mothers and babies might need–food, vitamins, and formula milk. Sadly, they’ve sometimes paid for burials, too.
Brother Paul calls Glory Reborn’s assistance “unli”— a colloquial term for unlimited mobile phone data plans. Hearing this, Hilary smiles. “Well, we’re all in this together,” she said.
These profiles were taken from an article originally published on Medium on February 21, 2016. See: https://medium.com/the-development-set/curbing-hiv-with-empathy-not-bigotry
Philippines’ HIV Dilemma: Too Young for a Test But Old Enough for Sex
Ana P. Santos
When Rey* first got an HIV test, his mother went with him. He was 17 and her consent was required by law.
“My mum and I are pretty close. She has no issues about me being gay and is really supportive. But I know a lot of my friends wouldn’t dare bring their mums with them to get an HIV test,” says Rey, from Palawan.
His test came back positive and although it frightened him, Rey couldn’t say he was surprised.
Sexual initiation came early but condom use did not. He was 14 when he had his first sexual encounter and 16 when he tried to buy condoms at the local pharmacy. Condoms were placed behind the counter. Rey had to endure the awkwardness of telling the cashier he wanted to buy condoms and the knowing looks he got.
“It was bad enough that people in line heard me and knew what I wanted to buy. But the cashier kept looking at me and I could feel her sizing me up. It made me feel so small,” he says. Rey did not try buying condoms again.
“When I started having sex, I didn’t know anything about condoms. When I tried to buy them, I couldn’t. It was just too embarrassing. In a way, getting HIV was inevitable,” he says.
The Philippines, an archipelago of more than 100 million people in southeast Asia, is experiencing a surge in infections. Of the more than 40,000 people living with HIV, the majority were diagnosed in the past five years and many are young men.
Activists blame the increase on outdated laws and the grip of the Catholic church, which has sought to restrict safe sex programs, sex education, and efforts to distribute condoms to at-risk groups.
Homosexuality is legal, but the law prohibits people under 18 from getting an HIV test or taking free condoms from public health clinics without parental consent.
Attempts by politicians to lower the age of testing without consent to 15 failed to gain sufficient support, leaving many young people without the means to protect themselves.
“Comprehensive sex education was never really taught in school. There is a gap in the knowledge of communicating HIV and STI [sexually transmitted infections] prevention on the side of teachers and even healthcare providers,” says Mario Balibago, HIV program officer for the UN children’s agency, UNICEF.
Lack of awareness has resulted in risky sexual behavior among teenagers.
A study by the Department of Health on sexual behavior among young gay men said adolescents were using social networking accounts and cruising sites to meet partners. From 2011 to 2015, newly diagnosed HIV cases among the most affected populations—predominantly young men and transgender people who have sex with men—increased by 230 percent.
Cris Pablo, executive creative director of the LoveLife Project, an organization that raises awareness about HIV, says young people have had sex in exchange for playing online games.
“Playing is an all-night activity, there is betting involved and, inevitably, they run out of money. Selling quick sex is an easy solution. The exchange is done in a dark corner outside the internet shops, behind parked vans or secret places identified by the boys as their ‘hang-out’ place,” says Pablo.
The health ministry estimates that nearly 10,000 adolescents have HIV, but only 10 percent have been diagnosed. Fewer than 400 are enrolled on anti-retroviral (ARV) therapy.
“We cannot treat them if we cannot diagnose them,” says Dr. Genesis Samonte, head of the health ministry’s HIV and AIDS unit. “If we don’t identify them and get them on ARV now, these adolescents are going to die within the next 10 years.”
Authorizing doctors to give proxy consent for minors who want to get tested is reportedly being discussed.
Quezon City, the largest city in metropolitan Manila, has one of the fastest growing HIV infection rates in the country. In response, the local health department launched a free testing campaign at cruising sites and set up clinics open until 11 p.m. to offer people privacy and the convenience of getting tested after office hours.
At a recreational center where students hang out after class, counselors hold sessions on HIV and hand out condoms and lubricants. “The law says we cannot give out contraceptives to minors. But we are giving out condoms as a prevention tool, not as a family planning tool,” says Dr. Rolly Cruz, epidemiologist at the city’s health department.
The government is also trying to reach teens at school. A sexuality education module for grade eight (students aged 13 to 14) is being tested on 3,000 students in Quezon City. The module will be revised based on the test run and is set for full implementation next school year.
“There has been no opposition from the school district. We see from what is happening around us that there is a need for HIV prevention education. We hope that there will be no opposition from the church,” says Cruz.
This article was originally published in The Guardian on July 24, 2016. See: https://www.theguardian.com/global-development/2016/jul/21/philippines-hiv-dilemma-too-young-for-a-test-but-old-enough-for-sex
To read more from Ana Santos: HIV in the Philippines
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The reporting in this book has spanned nine countries on four continents. Many of the programs covered here have been supported, at least in part, by the United States. Since 2004, the U.S. government has spent $57 billion on HIV/AIDS relief in 41 countries through the President’s Emergency Plan for AIDS Relief (PEPFAR), described as “the largest healthcare initiative by one country to address one disease.”
The United States will continue supporting AIDS prevention in other countries with a projected $5.2 billion PEPFAR outlay in 2017. But at the same time, the FY 2017 federal budget calls for spending $20.8 billion on HIV/AIDS domestically. State and local governments will likely spend billions more on treatment and prevention.
San Francisco’s Bold AIDS Mission Is “Getting to Zero” by 2030
Three episodes of “The End of AIDS” series explored how these programs are working across America. William Brangham, Jon Cohen, and Jason Kane first visited San Francisco, which was hard-hit by the epidemic in the early 1980s.
Why the South Is the Epicenter of the AIDS Crisis in America
Brangham, Cohen, and Kane then went to Atlanta, Georgia, which, along with the rest of the southeast, is now the epicenter of the U.S. epidemic. There they discovered a fledgling effort to bring the disease under control and help the black gay and bisexual men who have been hit the hardest.
Ending AIDS in New York Means Finding the Most Vulnerable
The third U.S. episode focused on New York state, home to more HIV positive people than any state in America, but also a place where there’s newfound political will to care for them, and aggressively prevent future infections.
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“If We Work Hard We Can End AIDS as We Know It:”
An Interview with Sandra L. Thurman
The Pulitzer Center’s Jane Darby Menton recently spoke with Thurman about her experience working on AIDS.
You’ve been working in the global health field for decades. When did you first become involved with AIDS policy?
I actually first got started in AIDS work as a hospice volunteer in 1982 when one of our first family friends was diagnosed with something that we, at that point in time, don’t think even called AIDS. So that that was my first foray: providing home care for someone who was sick at a time when people were really, really afraid of this disease.
And why did you stick with it for the rest of your career?
Well, I certainly didn’t plan on it. In the early days of AIDS, we really thought the disease would be managed and that we would find a cure and vaccine within five years’ time. In fact, Secretary of Health and Human Services Margaret Heckler [under President Ronald Reagan] came on television early on and told everybody that we could expect a vaccine and a cure, and that this would be handled in fairly short order. Of course, all of that was wrong.
So, in the beginning of the epidemic, most of us who were dealing with the immediate crisis of friends and loved ones and community members dying never dreamed in a million years that those of us who didn’t die from the disease would still be [dealing with] it 30 years later. I was in the process of applying to the Peace Corps. So that’s what I thought I would do in two or three years when the crisis was over, but then the crisis didn’t end and here I am.
What do you think have been the most effective advances in terms of trying to get to an end of the epidemic?
I think the biggest advances have been our scientific advances. The fact that we are able to now treat disease fairly effectively, and in a way that is cost-effective even in the developing world, has been extraordinary. What I don’t think we would have ever imagined in the early part of the epidemic was that treatment would ultimately—at least at this point—become our biggest mode of prevention. We really thought that behavior change—behavior modification messages—would be more effective but that was much easier when we had targeted epidemics. When we had epidemics in particular populations like gay men in a particular age demographic in a particular city in America, or sex workers in Thailand, you could actually target the populations with blanketed prevention messages, which could be more effective.
What we didn’t understand particularly with respect to the global epidemic was that we would have these big generalized epidemics like we do in Africa. And then that kind of behavior change messaging gets to be a little more challenging and a little less effective.
What about at-risk populations? What do you think is next for them?
One of the most challenging things about this epidemic has been the fact that it does affect populations that are already at risk in some way. Many years ago our then-secretary of health and human services Dr. Louis Sullivan [under President George H. W. Bush] said that AIDS does to societies what it does to the human bodies: it finds its weakest points and attacks there. If you take populations who are marginalized in some way—whether they’re LGBTI communities, men who have sex with other men who don’t identify as gay, prisoners, drug users, sex workers—these people are on the fringes of society and generally don’t have access to health services and health education and support systems that the general population has. So, it gets more and difficult to reach them, to get them to get tested, to get them to get on treatment, and then to find ways to keep them on treatment. And then there are all kinds of issues of adherence that often have to do with lack of education, but more often lack of economic security and stability and access to regular services that are user friendly for the populations at risk.
And that’s going to continue to be a challenge for us, to get people in treatment and get people on treatment. This behavior change and adherence business is difficult under the best of circumstances, but it certainly is exacerbated by a disease that still carries with it extraordinary stigma and discrimination, even in the United States and other industrialized nations. I think that’s the thing that continues to be our biggest challenge… What do we do around stigma and discrimination around HIV and AIDS. And a lot of that has to do with our internalized and collective norms around homosexuality and other kinds of behaviors that continue to trip us up in our efforts to stem the spread of this disease.
So what do you think can be done about that?
In some ways, we are making huge progress. I think if we look at what has happened among largely gay white men in America, the strides we have made in the gay community in our country over the past 30 years have been absolutely extraordinary. But there are some pockets where this is still particularly a challenge. So I think we just have to continue chipping away at this. These norms don’t change overnight. This epidemic has shone a very bright light on the disparities among peoples in this country and around the world and made it clear to us how our inabilities to really address social justice issues of equality and equity will—not only in this disease but in diseases to come—will continue to trip us up in ways that have huge impact for us all.
Many of us who report on AIDS have noticed a discrepancy in data reporting. The HIV incidence rates on the UN’s AIDSInfo.com website are per 100 HIV-negative people, but the incidence rates for the U.S. in the CDC’s HIV Surveillance Reports are listed as per 100,000 people in the general population. How is this data reported and is there any means of standardizing it?
The whole reason that we have UNAIDS is so that we are able to try to coordinate and collaborate in our data gathering and analysis. And data—making sure that we are correctly collecting and analyzing data in this epidemic—is the key to winning or losing for us. Now, granted, when you have so many cooks in the kitchen, as it were, you’re not going to necessarily get data that exactly match. But what we generally do is use the UNAIDS data and we try to use that as our collective database to help us build our strategies in response to HIV. Is it perfect, no, and will it ever be perfect, no. But we tend to improve it and under the leadership of the current director of PEPFAR, Ambassador Deborah Birx, the focus on data has been fine-tuned and emphasized in a new way. Her leadership and insistence on all of us making sure that the interventions that we’re using are based on the absolute best data we can get. And we’re excited about that because I think it’s making us better and bringing us closer to the goal of AIDS free generation.
What is next? Can AIDS be ended?
I don’t know that we will ever in this generation bring an end to AIDS. Bringing an end to diseases takes a while. But I am very confident that if we work hard we can end AIDS as we know it, and I think that’s the more important thing. Whether we get rid of the virus like we have smallpox, I don’t see that on the horizon, but what I do see is our ability to eliminate pediatric AIDS—transmission from mother to child—and in particular populations. Are we going to have an end to AIDS, period full stop in the immediate future? Probably not. Do we have capacity—do we have the tools we need—to bring an end to AIDS as we know it? Yes. I think the only question is: “Do we have the political will to make it happen?”
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ADR - Adverse Drug Reaction: (AIDSinfo Glossary)
Any unintended, undesirable response to a drug taken at a normal dose for normal use. Adverse drug reactions (ADRs) are classified by onset, severity, and type.
AIDS - Acquired Immunodeficiency Syndrome (WHO - HIV/AIDS Acronyms and Abbreviations)
ART - Antiretroviral Therapy: (AIDSinfo Glossary)
The daily use of a combination of HIV medicines (called an HIV regimen) to treat HIV infection.
ARV - Antiretroviral: (AIDSinfo Glossary)
A drug used to prevent a retrovirus, such as HIV, from replicating.
CAPRISA - Center for the AIDS Program of Research in South Africa: (CAPRISA)
The main goal of CAPRISA is to undertake globally relevant and locally responsive research that contributes to understanding HIV pathogenesis, prevention and epidemiology as well as the links between tuberculosis and AIDS care. CAPRISA is the UNAIDS Collaborating Center for HIV Research and Policy.
CDC - Centers for Disease Control (www.cdc.gov)
CD4: (AIDS.gov - CD4)
CD4 cells are a type of white blood cells that play a major role in protecting your body from infection.
CMV Retinitis - Cytomegalovirus Retinitis: (American Academy of Ophthalmology)
CMV retinitis is a serious viral eye infection of the retina, the light-sensing nerve layer that lines the back of the eye. It is most often found in people with weakened immune systems.
HIV - Human Immunodeficiency Virus (WHO - HIV/AIDS Acronyms and Abbreviations)
IDP - Internally Displaced Person: (United Nations Human Rights - Questions and Answers about IDPs)
A persons or groups of persons who have been forced or obliged to flee or to leave their homes or places of habitual residence, in particular as a result of or in order to avoid the effects of armed conflict, situations of generalized violence, violations of human rights or natural or human-made disasters, and who have not crossed an internationally recognized border.
PEPFAR - U.S. President’s Emergency Plan for AIDS Relief: (PEPFAR)
PEPFAR is the U.S. Government initiative to help save the lives of those suffering from HIV/AIDS around the world.
PrEP - Pre-Exposure Prophylaxis: (What is PrEP)
PrEP is the use of anti-HIV medication that keeps HIV negative people from becoming infected.
TasP - Treatment as Prevention: (Avert - TasP)
TasP refers to HIV prevention methods that use antiretroviral treatment (ART) to decrease the risk of HIV transmission.
A type of white blood cell that is of key importance to the immune system and is at the core of adaptive immunity, the system that tailors the body’s immune response to specific pathogens.
The Joint United Nations Programme on HIV/AIDS (UNAIDS) leads and inspires the world to achieve its shared vision of zero new HIV infections.
90-90-90: (UNAIDS 90-90-90)
A UNAIDS goal: By 2020, 90 percent of all people living with HIV will know their HIV status. By 2020, 90 percent of all people with diagnosed HIV infection will receive sustained antiretroviral therapy. By 2020, 90 percent of all people receiving antiretroviral therapy will have viral suppression.
(click links to view projects)
AfricaHIV’s Origins–and the Lessons for Today
Interrupting Rape Worldwide
Rwanda: Teens Reaching Across a Divide
TB in South Africa
Zambia: Activists Focus Efforts on Fighting AIDS
The Church and HIV/AIDS in Jamaica
Dominican Republic: Life on the Margins
The Forgotten: HIV and the Garifuna of Honduras
Glass Closet: Sex, Stigma, and HIV/AIDS in Jamaica
Heroes in HIV: HIV in the Caribbean
HIV/AIDS in Haiti After the Earthquake
Hope: Living and Loving with HIV in Jamaica
Act Up Oral History Project http://www.actuporalhistory.org/
Video clips and transcripts of interviews with members of the AIDS Coalition to Unleash Power, New York.
African American AIDS History Project http://afamaidshist.org/
An online repository for oral history and primary sources related to African American AIDS activism.
AIDS Oral History Projects https://www.library.ucsf.edu/collections/archives/manuscripts/aids/ohTranscripts of interviews with healthcare professionals who played a key role in the early years of the AIDS epidemic.
Crane, Johanna Tayloe. Scrambling for Africa: AIDS, Expertise, and the Rise of American Global Health Science. Ithaca, N.Y.: Cornell University Press, 2013.
Ethnographic study on HIV research and treatment in Africa during the PEPFAR era.
Epstein, Steven. Impure Science: AIDS, Activism, and the Politics of Knowledge. Berkeley: University of California Press, 1996.
A history focused on the early debates about the cause of AIDS and the drug approval process among people with AIDS, activists, health professionals, and researchers.
France, David, et al. How to Survive a Plague. New York: Sundance Selects, 2013.
Academy Award nominated documentary about two AIDS activism groups, the AIDS Coalition to Unleash Power and the Treatment Action Group, during the 1980s and 1990s.
Shilts, Randy. And the Band Played On: Politics, People, and the AIDS Epidemic. New York: St. Martin’s Press, 1987.
Award-winning book about the explosive growth of HIV/AIDS in the 1980s, written by one of the first reporters to cover the disease.
Sontag, Susan. AIDS and Its Metaphors. New York: Farrar, Straus and Giroux, 1989.
This work expands on the concept that stigma surrounding a disease adds to the suffering of people with the illness by exploring metaphors and myths associated with AIDS in the 1980s.
Mojola, Sanyu A. Love, Money, and HIV: Becoming a Modern African Woman in the Age of AIDS. Berkeley: University of California Press, 2014.
Explores the question of why young Kenyan women are more at risk of contracting HIV than young men by looking at issues of consumption and modernity.
National Library of Medicine. Surviving and Thriving: AIDS, Politics, and Culture. https://www.nlm.nih.gov/exhibition/survivingandthriving/index.html.
An exhibition on the history of AIDS, activism, outreach, and politics in the US. It includes a digital gallery, online activities, and lesson plans.
Simone, Renata, et. al. Frontline: The Age of AIDS. Alexandria, VA: PBS Home Video, 2006. http://www.pbs.org/wgbh/pages/frontline/aids
Documentary and website created for the 25th anniversary of the first diagnosed case of AIDS. The four-part documentary and material on the website includes interviews with activists, policy makers, public health officials, and researchers that cover an array of topics from the creation of the AIDS Quilt to the research behind tracing the origins of HIV.
World Health Organization. Global Health Sector Strategy on HIV 2016-2021: Towards Ending AIDS. Geneva: World Health Organization Press, 2016. http://apps.who.int/iris/bitstream/10665/246178/1/WHO-HIV-2016.05-eng.pdf.
The World Health Organization’s outline for ending HIV/AIDS as a public health threat by 2030.
Used in the preparation of this book’s graphics
Interactive Map: HIV Rates Around the World
“AIDSinfo 2016 Estimates” UNAIDS
“HIV in the United States: At a Glance” Centers for Disease Control and Prevention
Interactive Map: Cost of Efavirenz
“Global Price Reporting Mechanism for HIV, Tuberculosis, and Malaria” World Health Organization
PBS Newshour 90-90-90 Graphic
T J Maposhere
Ana P. Santos
design and photo editing
editing, graphics, supplemental text, and research
Jane Darby Menton
editorial & design consultants
Kem Knapp Sawyer
The Pulitzer Center is a non-profit organization that funds independent reporting with the intent of raising the standard of media coverage and engaging the broadest possible public in global affairs. The Center partners with major newspapers, magazines and broadcast outlets as well as universities and high schools.
The Pulitzer Center’s reporting on HIV/AIDS is supported by the M∙A∙C AIDS Fund (M·A·F) and other generous donors.
Photographs and text © named journalists, 2016. All rights reserved. No part of this book may be reproduced in any form whatsoever without written permission from the publishers.
Jon Sawyer, Executive Director
Nathalie Applewhite, Managing Director
Tom Hundley, Senior Editor
cover photo by Misha Friedman