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The Lost Children of AIDS

In January 2003, President George W. Bush asked Congress for $15 billion to fund international AIDS programs in developing countries under the President’s Emergency Plan for AIDS Relief, or PEPFAR. One tenth of the money was to be spent on children whose parents were victims of AIDS. Most of this money would go to Africa, home to some 12 million such children who for nearly two decades had been all but forgotten by their own governments, as well as by foreign donors such as the US.

The new money is part of a welcome trend. Rich governments and private donors now spend some $6 billion a year on international AIDS programs, twenty times more than they did a decade ago. Funding is also increasing for programs to help what are known in aid circles as “orphans and vulnerable children,” or OVCs. These are children who lack parental care because their parents have died of AIDS or are too sick to look after them. The OVCs category also includes the relatively small number of such children who are HIV-positive themselves.1 Roughly $600 million will be spent on aid programs for OVCs in 2005, and this is predicted to triple by 2007.

While this is good news in many respects, it may also be cause for concern. As foreign aid budgets rise, they tend to become more political and sometimes less effective. I worked in Uganda during the early 1990s when the country’s HIV infection rate was at its peak, with some two million people infected. In response, foreign donors were pouring money into the country, but it wasn’t always clear whether it was going to the right places. European and American consultants came and went from the airport and their brand-new sport utility vehicles churned up the narrow lanes of slums and villages across the country. They hired servants and guards and drivers and translators and set up offices in newly renovated buildings in Kampala’s genteel suburbs. Ugandans tended to greet them with outward courtesy and inward skepticism. In private discussions they wondered why the aid workers were spending so much money on offices and vehicles and staff residences that were palatial by local standards, when so many Ugandans were sick and poor and hungry.

The Ugandans were right to wonder. At least 60 percent of US foreign aid funding never leaves the US, but is instead spent on office overhead, travel, procurement of American-made cars, computers, and other equipment, as well as salary and benefit packages so generous that just one of them would be enough to feed, clothe, and educate hundreds of African children for years.2 Some of the money that arrives in Africa is well spent, but much of it is wasted on ill-conceived projects designed by foreign technocrats with little sense of African realities. In the high-stakes scramble for funding, the best projects—those that truly meet the needs of local people so that they can eventually support themselves—are often overlooked. People used to joke that there were two kinds of AIDS in Uganda: “slim AIDS” and “fat AIDS.” Those with “slim AIDS” grow thinner and thinner and thinner until they finally disappear. “Fat AIDS” afflicts development agency bureaucrats, foreign consultants, and medical experts who attend lavish conferences and workshops in exotic places, earn large salaries, and get fatter and fatter.

In June 2005, I accompanied Jonathan Cohen of Human Rights Watch on a mission to South Africa to report on discrimination against AIDS orphans in the education system. Among the many organizations we visited were two programs funded by President Bush’s PEPFAR that made me wonder whether history might be repeating itself. Between them, these programs had received roughly $10 million from the US government to help AIDS orphans but, like some of the programs I had seen in Uganda, very little of it seemed to be reaching the people who need it most.3

It is far too early to pass judgment on the entire five-year PEPFAR program, slated to run until at least 2008. Most PEPFAR funding is being used to support medical treatment for AIDS patients and HIV prevention programs. Early assessments have been mixed. PEPFAR is supporting some exemplary AIDS treatment programs such as the AIDS Support Organization (TASO) in Uganda and the South African Catholic Bishops Conference, but much of the money for HIV prevention is going to evangelical Christian groups that disparage condoms.4 In addition, treatment programs are reaching fewer people than was originally hoped. The dire state of African clinics and hospitals is part of the problem, but the greed of US-based contractors is also a factor.

For example, the Maryland-based Institute of Human Virology proposed to spend $600,000 to hire three consultants to “mentor” South African health workers—an amount that could have been spent on antiretroviral drug treatment for some five hundred poor South Africans. In another example, the North Carolina–based Family Health International proposed to hand over $1 million of a $3 million PEPFAR grant to Northrop Grumman, a military contractor, which would conduct “monitoring and evaluation” of Family Health’s orphan programs. Under the terms of the original contract, which was fortunately changed, Family Health International and Northrop Grumman would each receive more than twice as much money as all the orphans combined.

The US government makes it nearly impossible to obtain detailed financial information about its foreign aid programs, and federal agencies have thus far failed to give me information about the programs described here; a Freedom of Information Act request has been pending for two months. USAID officials need to tell us more about where taxpayers’ dollars go after they leave their offices, if sending money to Africa is to do more than merely make Americans feel good about themselves.

1.

In December 2002, the American talk-show host Oprah Winfrey rented a sports complex near Soweto, the vast black township on the outskirts of Johannesburg, South Africa, and gave a party for 124 AIDS orphans. There are around one million such children in South Africa. Most live in extreme poverty and many suffer from abuse, discrimination, and neglect. At the party there was food, dancing and singing, and a gift for each child—for some, it was the first they had ever received. “One little girl was so excited that she could not open her present, and instead was kissing the plastic,” Oprah told South Africa’s Star newspaper after the party.

When we were in South Africa, Jonathan and I met some of the orphans who had attended Oprah’s Christmas party. We were introduced to them by Elizabeth Rapuleng, a stout, elderly African woman who lives in Meadowlands, a bleak neighborhood of tiny concrete houses on a flat dusty plain on the edge of Soweto. At the time of Oprah’s party, Elizabeth was working for Hope Worldwide, a US-based Christian charity that runs medical relief programs in seventy-five countries. Hope is linked to the International Church of Christ, a fundamentalist evangelical Christian group, and receives funding from the church itself, the US government, and various private donors.

In 2002, Hope was one of the largest US nongovernmental organizations working on AIDS in South Africa, and had been providing counseling, medical care, and HIV prevention advice to patients for some ten years. So when Oprah wanted to give a party for orphans in Soweto, she naturally contacted Mark Ottenweller, the director of Hope’s South African office. At the time, Hope had just begun to work with orphans, but Ottenweller knew that his colleague Elizabeth ran an organization in Meadowlands called Sizanani Home Based Caregivers that provided food, counseling, and other services to many such children, and he asked Elizabeth to invite them to the party.

As publicity for Hope, Oprah’s party was a great success. Oprah’s Angel Network charity produced a film in which Ottenweller introduces Oprah to some of the orphans. Hope’s press release about the party is still on its Web site three years later. Around the time of the party, Hope began negotiations with PEPFAR officials and in 2004 it received an $8 million US government contract to provide services to 165,000 AIDS-affected children in South Africa and five other African countries. We can imagine that its chances were not hurt by the publicity from the party and the link with Oprah.

Meanwhile Sizanani—Elizabeth’s organization—was struggling for funds. In 2001, Elizabeth, along with her two grown daughters, Florence and Dorothy, had established Sizanani with a small grant from the South African government’s Department of Social Development. The administration of President Thabo Mbeki has been rightly criticized for downplaying the impact of AIDS in South Africa. However, for the past four years it has been funding a small number of “Drop-In Centres” like Sizanani that provide services to OVC children. Africa has few formal orphanages. It is the policy of African governments and international agencies to keep as many children as possible out of institutions, and to encourage extended families to take in orphans. However, as Jonathan and I found, and as other studies have shown, many families are too poor to care for extra children and even in relatively well-to-do families, AIDS orphans are sometimes abused and neglected. They are less likely to attend school than the biological children of their guardians, they are more likely to be forced to perform arduous labor, and they are more likely to be physically abused and raped by guardians and others.5

In the late 1990s, the South African government began to recognize that its own child welfare officers and social workers—of which there are now only three for all of Soweto, with a population of well over a million—could not meet the needs of the nation’s rapidly growing orphan population. Experience from other African countries has shown that small, locally run and managed organizations can provide a crucial safety net for OVCs.6 So the Department of Social Development began funding a small number of organizations throughout the country—Sizanani among them—to provide AIDS-affected children with food and clothing and other basic needs and to identify cases of abuse or neglect.

Elizabeth had been born and raised in Meadowlands and during the preceding decade she had seen how the AIDS epidemic was wrecking her community. The willingness of African families to take in so many orphans has been seen as an expression of the spirit of “Ubuntu”—the ancient African concept of shared humanity captured in the traditional Zulu saying “A person is a person through other people.” However, Elizabeth knew that Ubuntu had its limits. As she witnessed the unfolding horror of the AIDS crisis, she wanted to create a community-based center that would be open all the time where orphans and children with sick parents could receive free food and other necessities, and where they could play safely and find adults who could help them if they were in distress. She wanted, as far as possible, to give these children the care they lacked. When she heard about the new government funding, she jumped at the chance.

  1. 1

    About one third of children born to HIV-positive women inherit the virus during childbirth or breastfeeding. Most of these children die of AIDS by age five; a very small number are being kept alive for longer periods with antiretroviral drugs.

  2. 2

    Curt Tarnoff and Larry Nowels, “Foreign Aid: An Introductory Overview of US Programs and Policy,” Congressional Research Service, Library of Congress, updated January 19, 2005.

  3. 3

    See Human Rights Watch, “Letting Them Fail: Barriers to Education for Children Affected by AIDS,” October 2005.

  4. 4

    See Helen Epstein, “God and the Fight Against AIDS,” The New York Review, April 28, 2005.

  5. 5

    See UNICEF, “Africa’s Orphaned Generations,” 2003; Human Rights Watch, “Letting Them Fail”; Takashi Yamano and T.S. Jayne, “Working-Age Adult Mortality and Primary School Attendance in Rural Kenya,” Economic Development and Cultural Change, Vol. 53, No. 3 (2005), pp. 619–654; Anne Case and Cally Ardington, “The Impact of Parental Death on School Enrollment and Achievement: Longitudinal Evidence from South Africa,” unpublished manuscript, February 7, 2005; David Evans and Edward A. Miguel, “Orphans and Schooling in Africa: A Longitudinal Analysis,” unpublished manuscript, March 1, 2005; and Martha Ainsworth, Kathleen Beegle, and Godlike Koda, “The Impact of Adult Mortality and Parental Deaths on Primary Schooling in North-Western Tanzania,” Journal of Development Studies, Vol. 41, No. 3 (April 2005), pp. 413–415.

  6. 6

    See Geoff Foster, “Supporting Community Efforts to Assist Orphans in Africa,” The New England Journal of Medicine, Vol. 346, No. 24 (June 13, 2002), pp. 1907–1910.

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