Life and hope with HIV Fighting AIDS in Africa How a president’s initiative tamped down an epidemic Ingrid Kealotswe vividly remembers the despair in Botswana’s Princess Marina Hospital. Her 6-month-old son, Liam, had tested positive for HIV and joined dozens of children on the ward who existed in unimaginable limbo. As an adult, Kealotswe had been able to get treatment for her own HIV, but the same virus that had been subdued in her body raged unopposed in her child. Without treatment, parents watched as their children slipped from life. “It was like a storm of death,” Kealotswe said in an interview nine years ago. “I would sit and wonder, ‘Am I going to go back home without Liam?’ There were so many mothers coming into the hospital with their children and going back home without their children. You listen to those mothers crying every time a child dies. It was horrible.” But a current of hope was coursing through Princess Marina Hospital. Word spread in the children’s ward. By 2002, Kealotswe heard the whispers among other mothers of a “white door.” A door where skeletal, listless children entered, and emerged baby-plump and happy. Stigma and fear kept the abbreviation “HIV” from entering the conversation. But the parents could talk about the white door. Behind that white door was hope for both Kealotswe’s family and the rest of the world. The imagination and grit of a Texas pediatrician, the concern of the president of Botswana and his people, and the humanitarian commitment of a U.S. president all combine in the story of this clinic. Dr. Mark Kline and his team with the Baylor International Pediatric AIDS Initiative, or BIPAI (pronounced bee-pie) had been treating kids with HIV, first in the U.S. and then in Romania. Kline had begun planning for expansion into Africa, and a transformative speech by Botswana President Festus Mogae at an AIDS conference focused his attention on Botswana. If BIPAI could partner with the efforts of Botswana physicians and Ministry of Health, the doctors could expand the model that had worked in Romania. And if it worked in Botswana, it just might work elsewhere in the Africa. So through private donations from the Bristol-Myers Squibb Foundation, the BIPAI team approached Botswana’s Ministry of Health with a proposal and a commitment: to build a clinic where Botswana children could access life-sustaining care for the rest of their lives. The ministry agreed. BIPAI would start with a small clinic, with construction of a freestanding building on the way.


EDITORIALS From Texas to Botswana, connecting to the humanity in families with HIV They called it the BANA clinic (Botswana-Baylor Antiretroviral Assessment) — “bana” means “child” in the Setswana language. It was little more than an old store closet fitted with an exam table and some basic equipment, but at the time of its founding it was the only source of treatment for HIV-positive children in sub-Saharan Africa. Housed behind an inconspicuous white door, the clinic offered hope above all else. Kealotswe took Liam to the white door in a step of faith. Sure enough, Liam began to get better. By the time BIPAI opened the Botswana-Baylor Center of Excellence in 2003, the public-private partnership was the largest provider of pediatric HIV care in sub-Saharan Africa. Such an outcome was never supposed to be possible. Now, there was a model that worked. BIPAI just had to find a way to expand. More than 77 million people have become infected with HIV over the years. Millions more have cared for them. In a plague of this magnitude, is it difficult to find the bright spots, and more difficult still to see how you relate to an HIV patient half a world away. But by examining the impact of a Texas physician and a Texan president’s plan, we can better understand the moral necessity of extending a hand beyond one’s own borders. You have a place in this story too. Everyday Americans are silent yet vital partners to the researchers, physicians and governments around the world who joined forces to end a plague. For the last 15 years, American generosity has led what is quite possibly the biggest global health campaign in the history of the world through the taxpayer-funded President’s Emergency Plan for AIDS Relief. HIV/AIDS: A timeline 1981 The U.S. Centers for Disease Control and Prevention issues a warning about a rare form of pneumonia among a small group of gay men in Los Angeles. 1982 The CDC establishes the term “acquired immune deficiency syndrome.” The first AIDS case is reported in Africa. 1984 Associated Press file photo The virus that causes AIDS is isolated by Luc Montagnier of the Pasteur Institute and Robert Gallo of the National Cancer Institute; it is later named the human immunodeficiency virus. 1985 Associated Press file photo Ryan White, 14, is denied admission to school in Kokomo, Ind., because he has AIDS. He becomes the poster child for the horrors of HIV/AIDS in America. 1986 Getty Images file photo The drug AZT is used in clinical trials. 1987 AZT is the first drug approved by the Food and Drug Administration for the treatment of AIDS. The AIDS Memorial Quilt is displayed on the National Mall, bringing the disease to the attention of America. President Ronald Reagan makes a public speech about AIDS after broad criticism for not speaking the name of the disease. There have already been more than 4,000 confirmed deaths of AIDS in the U.S. 1988 The World Health Organization declares Dec. 1 to be World AIDS Day. 1989 Associated Press file photo First Lady Barbara Bush, visits Grandma’s House — a home for HIV-positive children. She played, hugged, and held these children even as the home itself faced its landlords unwillingness to host HIV-positive persons. 1990 Ryan White dies in Indianapolis at 18. His death galvanized Congress to pass the Ryan White Care Act, a program to help fund primary medical care and support services for HIV/AIDS patients. The FDA approves AZT for use in children. 1991 Associated Press file photo Magic Johnson announces he is HIV-positive and retires from basketball. 1992 The eighth International AIDS Conference moves to Amsterdam from Boston due to a U.S. ban on immigration and travel to the U.S. by people with HIV/AIDS. 1994 The U.S. Public Health Service recommends use of AZT by pregnant women to reduce perinatal transmission. AIDS becomes the No. 1 cause of death for all Americans ages 25 to 44. More than 34,000 Americans have died. 1995 The FDA approved the first protease inhibitor, a drug that stops the HIV virus from replicating in the body. The drug is an immediate success, but at close to $10,000 per patient per year, it remains too expensive for many countries to offer at scale. 1996 Dr. Mark Kline travels to Romania with a team from Texas Children’s Hospital. AIDS is no longer the No. 1 cause of death for all Americans ages 25 to 44, but it remains the leading cause of death for African-Americans in that age group. Media reports declare “AIDS no longer a death sentence” thanks to the introduction of highly active antiretroviral therapy. HIV incidence peaks. The estimated number of people living with HIV worldwide rises to 23 million. (NCBI, Avert) 1997 The FDA grants accelerated approval for Viracept (nelfinavir), the first protease inhibitor labeled for use in children as well as adults, and the FDA approves pediatric labeling for the protease inhibitor Norvir (ritonavir). AIDS-related deaths in the U.S. decline by more than 40 percent from the previous year, largely due to highly active antiretroviral therapy. New infections begin to slow with the introduction of HAART, but UNAIDS still estimates that about 16,000 new infections occur each day. 1999 The Baylor Pediatric AIDS Initiative receives funding from the Sisters of Charity of the Incarnate Word to renovate a building in Constanta, Romania, for a pediatric HIV clinic. AIDS is the fourth largest cause of death worldwide, the leading cause of death in Africa. Total deaths rise to 14 million. 2000 Botswana President Festus Mogae warns at the World AIDS Conference in Durban, South Africa, that his country is “threatened with extinction.” The Baylor Pediatric AIDS Initiative begins talks about building a center in Botswana. 2001 The Baylor Pediatric AIDS Initiative officially opens the Romanian-American Children's Center in Constanta, Romania The 20th anniversary of the first reported AIDS case is marked. 2002 Even as new infection rates decrease, AIDS becomes the leading cause of death worldwide among people ages 15 to 59, and the leading cause of death in sub-Saharan Africa. 2003 President George W. Bush announces the President's Emergency Plan for AIDS relief during his State of the Union address. He asks Congress to commit $15 billion over the next five years, with a focus on 15 of the hardest hit countries. PEPFAR would eventually expand to the 60 countries currently served today. The Botswana-Baylor Center of Excellence opens in Gaborone to replace the tiny BANA clinic. First lady Laura Bush visits Botswana-Baylor Center of Excellence and meets Ingrid and Liam Kealotswe. Ingrid is now an activist for HIV/AIDS patients. 2005 Retroactively, 2005 is widely cited as the “peak” of HIV/AIDS deaths, with 1,900,000 AIDS-related deaths that year. BIPAI expands in Africa, opening the Baylor-Bristol-Myers Squibb Children's Clinical Center of Excellence in Maseru, Lesotho. 2006 Smiley N. Pool/©2006 The Pediatric AIDS Corps of the Baylor Pediatric AIDS Initiative launches to place 50 doctors per year in Africa. The Malawi-Baylor Center of Excellence opens. The mortality rate at the Romania center drops to less than 1 percent. 2008 The Uganda-Baylor Center of Excellence opens. Congress reauthorizes PEPFAR for an additional five years, with an authorization for up to $48 billion and a focus on integrating HIV response into countries’ health systems. This shift marks the transition from a fight for survival, to one of sustainability. 2009 Smiley N. Pool/©2009 President Obama lifts the travel and immigration ban on people with HIV, a restriction he cites as being rooted “in fear rather than fact.” George W. Bush and Laura Bush receive the 2009 Leadership Award from the Baylor International Pediatric AIDS Initiative 2011 Smiley N. Pool/©2011 Baylor Centers of Excellence open in Mwanza and Mbeya,Tanzania. The 30th anniversary of the first reported AIDS case is marked. 2012 The FDA approves a medication called pre-exposure prophylaxis (PrEP), that can prevent the sexual transmission of HIV between an HIV-positive and HIV-negative partner. With 54 percent of people clinically eligible for treatment now receiving HIV therapy, the majority of identified HIV patients now have access to care. 2013 Smiley N. Pool/©2013 Botswana-Baylor celebrates 10th anniversary and launches adolescent center to address the specific needs of HIV-positive patients. AIDS-related deaths have fallen more than 30 percent from their peak in 2005. 2014 The endgame is in sight for HIV, as UNAIDS launches the 90-90-90 targets which hope to have 90 percent of HIV-positive people to be diagnosed, have 90 percent of those diagnosed accessing antiretroviral treatment, and have 90 of those accessing treatment achieve viral suppression by 2020. 2016 In expansion of mission, the Botswana-Baylor Children’s Center of Excellence and the government of Botswana agree to build the first children’s hematology and cancer center of excellence in Gaborone. 2017 Progress made toward the 90-90-90 goals as more than half of the global population living with HIV are receiving antiretroviral treatment, amounting to more than 19.5 million people — a record. 2018 Dec. 1 is the 30th World AIDS Day. Sources Avert, HIV.gov, Kaiser Family Foundation, Baylor Pediatric AIDS Initiative, Baylor Pediatric AIDS Initiative, Elizabeth Glaser Pediatric AIDS Foundation, Food and Drug Administration and UNAIDS Compile by Smiley N. Pool, edited by Laura Hallas

Liam Kealotswe (third from left) played tug-of-war with children in the yard outside his home in Mapoka, Botswana, in June 2005. Six years earlier, when he tested positive for HIV as a baby and was sick, his mother feared she would lose him. But he received treatment at the Botswana-Baylor Center of Excellence in Gaborone through a program backed by the U.S. President’s Emergency Plan for AIDS Relief. (Smiley N. Pool/©2005)

Threatened with extinction Nearly two decades ago, the president of Botswana had a dire message to share with the world. His words at the International AIDS Conference in Durban, South Africa, were a major marker in the epidemic. “We are threatened with extinction. People are dying in chillingly high numbers. We are losing the best of young people. It is a crisis of the first magnitude,” Mogae told the audience of world leaders in 2000. He described a world that is almost unimaginable today. More than a third of the adult population in Botswana faced HIV/AIDS in 2000, and without widespread availability of the lifesaving medications known as antiretrovirals in use in the U.S., HIV was practically a death sentence. Death touched everyone. Teachers. Members of parliament. Doctors. Parents. The situation was even more grim for children. The drugs that were slowly approved for use in adults didn’t get the same green light for use in children right away. HIV threatened the very fabric of society across sub-Saharan Africa. The introduction in the U.S. of a triple combination antiretroviral therapy in 1996 transformed AIDS from a death sentence to a survivable lifelong disease. The transformation was near-biblical, with a name to match. The new drugs allowed skeletal figures, wasted by AIDS, to regain critical CD4 immune cells, pulling patients back from the brink of death. People called it the “Lazarus effect.” Ingrid Kealotswe bathed her son in a plastic tub in their home in the village of Mapoka. Botswana is a country of about 2.3 million people in southern Africa. (Smiley N. Pool/©2005) Liam sprinkled sugar on his morning bowl of corn flakes in June 2005 next to bottles of medicine prescribed for him and his mother. Ingrid Kealotswe is also HIV-positive. (Smiley N. Pool/©2005) Left: Ingrid Kealotswe bathed her son in a plastic tub in their home in the village of Mapoka. Botswana is a country of about 2.3 million people in southern Africa. Right: Liam sprinkled sugar on his morning bowl of corn flakes in June 2005 next to bottles of medicine prescribed for him and his mother. Ingrid Kealotswe is also HIV-positive. (Smiley N. Pool/©2005) Photos U.S.-led initiative helps save moms and babies in Uganda But those life-saving medications weren’t widely available in sub-Saharan African nations right away. Barriers ranging from the lack of pharmacy freezers to a dearth of physicians trained in HIV care prevented access to lifesaving drugs for entire countries. Many HIV experts and donors viewed the African HIV/AIDS epidemic as hopeless, a regionwide illness that must take its course. The attitude was more befitting to a case of the sniffles than a killer epidemic. Kline, who is now physician-in-chief of Texas Children’s Hospital, knew the world could do more to help kids with HIV. The Houston pediatrician had conceived of BIPAI somewhere over the Atlantic Ocean, sitting in a coach seat on his flight back to Houston from Bucharest. He couldn’t shake the image of HIV-positive kids abandoned in Romanian orphanages and begging on the streets. With the support of donors, such as the Abbott Fund and Houston’s Sisters of Charity of the Incarnate Word, and strong partnerships with the Romanian government, he helped build the infrastructure necessary to provide the state-of-the-art HIV medications available to American children. It was the right thing to do in Romania in 1996. And in 2000 when he read about Mogae’s plea in The New York Times, he knew he had to take action again. “A lot of experts had sort of written Africa off,” Kline said. “But I had seen the power of highly active antiretroviral therapy. I had seen the impact that it could have, and I felt like there was so much more that we could do.” The BIPAI network began preparing to expand to Botswana.

Liam, then 6, sleeps with his mother in their home in the village of Mapoka. (Smiley N. Pool/©2005)

‘A work of mercy’ As Kline and BIPAI worked from Houston to figure out how to expand HIV/AIDS care in Africa, President George W. Bush mulled over the same question in the Oval Office. Bush was well aware of the HIV/AIDS epidemic by the time he began his term. His father, George H.W. Bush, served as vice president to President Ronald Reagan at the height of America’s HIV/AIDS epidemic — the senior Bush had actually been booed on stage at the 1987 International Conference on AIDS, a reaction to Reagan’s lacking HIV response. Once he became president himself, George H.W. Bush accelerated federal spending for HIV research and response, but there simply weren’t enough affordable drug options at the time for any kind of widespread global health initiative. At about $20,000 a year, even that highly effective drug cocktail from 1996 was way too expensive to offer in low- and middle-income countries in any sustainable or widespread way. But in 2002, research showed that a single dose of an affordable drug called Nevirapine given to both the mother and the newborn could greatly reduce the risk of mother-to-child HIV transmission through birth and breastfeeding. For policymakers, this was huge. President George W. Bush called on Dr. Anthony Fauci, an HIV/AIDS expert at the National Institutes of Health who had already advised Bush’s father on the disease. The president wanted officials from the NIH and the Department of Health and Human Services to visit Africa and put together a program to reduce mother-to-child transmission with these affordable drugs.


The job was simple: They would design the program, he would take care of the funding. “The president expressed this feeling that we need to see if we could do something for the developing world,” Fauci said. “His words will stick with me forever: ‘We as a rich nation have a moral obligation to help people who don’t have access because of lack of resources.’ He felt it was a moral obligation.” Fauci presented the initial results to the president, proposing a relatively modest $500 million program to prevent mother-to-child transmission. The presentation went well, and Fauci prepared to leave the Roosevelt Room. But as he turned to go, the president pulled him aside. Fauci remembers Bush saying the U.S could do something even more “transformative, yet accountable.” “I got goose pimples,” Fauci said. Bush wanted to lead the global HIV/AIDS response on scale that no other nation would even dare to imagine. To Fauci, this request seemed almost too good to be true. Every presidential administration, before and since, approached any sort of aid initiative in the same general way. A project proposal arrives on the president’s desk; if he approves, the appropriate implementing agency carries it out. If a program required a vote through Congress, the path dragged on longer. Mourners shovelled dirt and tossed flowers into a grave as Ingrid Kealotswe attended the funeral of a relative near her home in Mapoka. (Smiley N. Pool/©2005 ) This time, a president was leading the charge. What Bush envisioned required entirely new understanding of what government could do. Treatment for HIV/AIDS entails a lifetime struggle of medication and therapy to keep immunity at a normal level. A lapse in funding or a future president’s cold feet would condemn millions. America had to get this right. Fauci worked furiously with Bush’s chief of staff, the Department of Health and Human Services, his assistant Dr. Mark Dybul, and a host of other actors to build just such a program. Which countries should they include in the first 15 focus countries? India? China? What about the Caribbean? The budget people were getting antsy about the $15 billion price tag — would the president say no to it all? The back-and-forth continued for months, until they had a final proposal. Bush approved. In his State of the Union address in January 2003, in between statements about the war in Afghanistan and the War on Terror, the president laid out the largest-ever commitment by a single country to the cause of global health. “Ladies and gentlemen, seldom has history offered a greater opportunity to do so much for so many. We have confronted, and will continue to confront, HIV/AIDS in our own country. And to meet a severe and urgent crisis abroad, tonight I propose the Emergency Plan for AIDS Relief, a work of mercy beyond all current international efforts to help the people of Africa. “I ask the Congress to commit $15 billion over the next five years, including nearly $10 billion in new money, to turn the tide against AIDS in the most afflicted nations of Africa and the Caribbean.” Congress erupted into applause. The President’s Emergency Plan for AIDS Relief, or PEPFAR, was born.

During a tour of the Botswana center in July 2003, first lady Laura Bush talked with Ingrid Kealotswe (left) as Liam, then 4, played with a toy. The center was the first of its kind on the African continent, serving children infected with HIV. (Smiley N. Pool/©2003)

‘We are not alone’ Bush’s announcement of PEPFAR put the program and BIPAI on a kind of humanitarian collision course. Shortly after Bush’s State of the Union address, Laura Bush and daughter Barbara Bush arrived in the lobby of the Botswana-Baylor Center of Excellence, the standalone successor of the one-roomed Bana Clinic. The first lady painted dolls and played with healthy kids, a far cry from the bleakness of the early days of the AIDS epidemic. “When Laura Bush came, it meant the world to me,” Kealotswe said. “Because to me what it told me is that we are not alone.” Congress granted the original $15 billion request and has continued to sustain the program, averaging nearly $6 billion a year in financial commitment. The list of focus countries was expanded from 15 to 60, including countries with stories as dire as Botswana’s. Today, PEPFAR operates through U.S. agencies ranging from the Centers for Disease Control and Prevention to the Department of Defense, partnering directly with recipient governments and health care providers every step of the way. The Kealotswes ride public transport to a shared doctor’s appointment at the Botswana-Baylor Children's Clinical Center of Excellence. (Smiley N. Pool/©2005) Ingrid Kealotswe and Liam walk across the courtyard as they leave a medical appointment at the clinic in April 2008. (Smiley N. Pool/©2008) Left: The Kealotswes ride public transport to a shared doctor’s appointment at the Botswana-Baylor Children's Clinical Center of Excellence. Right: Ingrid Kealotswe and Liam walk across the courtyard as they leave a medical appointment at the clinic in April 2008. (Smiley N. Pool/©2005, 2008) PEPFAR supports more than 14 million people on HIV treatment globally, and it has enabled more than 2.2 million babies to be born HIV-free to HIV-positive women. It’s a familiar refrain in the HIV/AIDS care community that it is nearly impossible to travel without seeing the benefits of PEPFAR, sometimes accompanied with fine print that says “sponsored by the American people.” As for the BIPAI network, Kline says PEPFAR had a catalytic effect in expanding the program’s reach. The mechanism of converting U.S. money to care in Africa is a function of more than a little legalese, but the basic formula is the same. BIPAI sought to meet children’s needs wherever it could, establishing training and treatment. PEPFAR amplified the impact of BIPAI’s partnership. BIPAI’s operations quickly expanded to other sub-Saharan countries hard hit by the HIV/AIDS epidemic, especially countries such as Botswana and Uganda, where incidence rates remain stubbornly high. As far as Kline is aware, the BIPAI network remains the largest single provider of pediatric HIV/AIDS care and operates in 12 countries, treating more than 250,000 children and their families. Dr. Adeodata Kekitiinwa, a Ugandan physician and executive director of Baylor-Uganda, is part of BIPAI’s growth. She was drawn to HIV work after she lost family members to AIDS, and now she is seeing her 14 years of experience in PEPFAR-funded work influence national Ugandan health policy. Ingrid Kealotswe laughed with Liam as they snuggled under a blanket at her mother's home in June 2014 in Gaborone. (Smiley N. Pool ©2014) Liam, now 19, rode an escalator during a visit in May to a shopping mall in Gaborone. (Smiley N. Pool/©2014, 2018) Left: Ingrid Kealotswe laughed with Liam as they snuggled under a blanket at her mother's home in June 2014 in Gaborone. Right: Liam, now 19, rode an escalator during a visit in May to a shopping mall in Gaborone. (Smiley N. Pool/©2018) “Many people do ask me what has kept me motivated for the last 14 years,” Kekitiinwa said. “I say, seeing the children that we treated as babies, seeing some of them now almost graduating. Some of them are volunteers here; they are helping us to care for the others. It’s very motivating. You walk in and someone comes running, they say, ‘Oh Dr. Addy, you can’t even remember me.’” Liam Kealotswe, the sick 6-month-old in Botswana, is 19 today. A painter, he hopes to re-create the image of his younger self with Laura Bush. His HIV diagnosis is no longer a death sentence, a reality he credits in part to PEPFAR. “I would thank [the Bushes] for what they have achieved, in the fight against HIV and AIDS.” Liam said. “If it wasn’t for their contributions and their work, I wouldn’t be here. I wouldn’t be talking to you right now.”

Ingrid and Liam Kealotswe walked across a field in May on land where Ingrid dreams of building a home a few miles from where her father lived near the village of Dikgonnye. (Photo by Smiley N. Pool/©2018)

Looking to tomorrow There has been immense progress in the last 15 years, but the fight against HIV/AIDS is only half over. There are more than 36 million people living with HIV/AIDS worldwide, with the burden disproportionately affecting East and Southern Africa. About 25 percent of the people in this group don’t know they are infected. And while Congress has kept funding relatively constant over the years, both former President Barack Obama and President Donald Trump proposed cuts to PEPFAR that put a squeeze on the program. Spending on HIV/AIDS is going down around the world, reflective of the AIDS-fatigue some voters (and donors) feel after hearing about the same disease for more than 30 years. HIV might be the first disease in history eliminated without a vaccine. It could also be a resurging plague, renewed by global apathy. It will take commitment and compassion to tip the scales in the right direction. But Dr. Deborah Birx, the U.S. global AIDS coordinator and ambassador-at-large, sees cause for hope. “Our taxpayer dollars are not only transforming the lives of others in combating this major disease, but it’s changing how they view America and it’s changing how people see us, as a generous, humane, compassionate country,” Birx said. “I get to see that every day because that’s how we are received in all countries where we work, and I wish that they could see it. It’s taking what they would naturally do in their community and bringing that to others that are in the greatest need.” Ingrid and Liam Kealotswe on May 19 in Gaborone. (Smiley N. Pool/©2018) “Community” can be difficult to visualize in an increasingly globalized world. The challenges we see firsthand, in our own lives, tend to take center stage. That’s just human nature. But once and a while, we can step outside of ourselves and see that African parents love their kids just as much as American parents love theirs, that American dollars have the potential to revive a generation, and that extending a hand in friendship and support is never wasted effort. The walls of Houston’s St. Regis hotel were alive with a photo presentation during a visit this year of the president of Botswana to honor his country’s partnership with the U.S. The slides showed a doctor bent over an exam table, figures in white coats and suits digging shovels into brown earth, the blue crest of the Republic of Botswana prominent in the background. Another slide showed a child in a hospital bed, smiling brown eyes turned toward the camera. A collection of these images, bound into a bright blue book, was given by Kline and Texas Children’s Hospital representatives to Mokgweetsi Masisi, president of Botswana. Sealed with a handshake, the gift celebrated more than 15 years of partnership. “From the very bottom of my heart, I give a sincere thank you to the people of the United States of America,” Masisi said that night, adding: “We need to make sure that we keep our eyes on true north, for the sake of human survival.” Laura Hallas is a writer in Austin. Follow her and Smiley N. Pool on Twitter at @LauraHallas, and @SmileyPool.