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The 19th International AIDS Conference, which concludes today in Washington, has highlighted some genuine signs of progress against the global HIV pandemic—chief among these, the campaign to prevent mother-to-child-transmission (PMTCT) of HIV. Yet the very success of this public health initiative has created dilemmas of its own—and raises profound ethical questions that the international community has barely begun to ponder.
To the concerned public and the policymakers who represent them, preventing unborn children from contracting their mother’s HIV/AIDS infection looks like a total no-brainer. The programs are inexpensive, relatively easy to implement, last for only a few months, and usually provide a concrete, positive outcome—an infant free of infection. The efficacy of these programs is impressive: MTCT HIV falls from 20 to 50 percent during pregnancy, delivery, and breastfeeding to under 5 percent.
And that is the intended result of such programs. There is, however, an unintended or invisible result as well. Over the last decade, PMTCT programs have swelled the ranks of AIDS orphans by allowing uninfected children to live long enough to watch one or both of their parents die from AIDS.
In 2009, in its most recent reckoning, UNAIDS estimated that there were more than 16 million children worldwide who have been orphaned because of the HIV/AIDS-related deaths of their parents—a figure nearly equal to the population of Australia. The overwhelming majority of these children live in sub-Saharan Africa, with Nigeria alone accounting for an estimated 2.5 million AIDS orphans; South Africa, 1.9 million; and Tanzania,1.3 million. Kenya and Uganda were estimated then to have 1.2 million AIDS orphans each—and all these totals have only been rising over the past few years.
South Africa probably offers the most accurate HIV/AIDS data of any sub-Saharan country. According to estimates for South Africa, the number of AIDS orphans as a percentage of total orphans has increased from virtually zero in 1990 to more than 75 percent today. South Africa has made notable advances in adult HIV/AIDS treatment program coverage over the past several years. Even so, the Actuarial Society of South Africa estimates that this proportion of AIDS orphans will continue to grow to almost 82 percent by 2025. By these estimates and projections, over a fifth of South Africa’s children are already AIDS orphans—and that fraction will continue to rise in the years immediately ahead.
Programs to prevent mother-to-child transmission have swelled the ranks of AIDS orphans by allowing uninfected children to live long enough to watch one or both of their parents die from AIDS.
AIDS orphans’ lives are saved because they did not contract their mother’s disease. This is a medical and humanitarian triumph. But humanitarians and medical professionals to date have given far too little consideration to the subsequent fate of these same children. All too often, these children experience unintentional neglect as their parent’s illness becomes more severe. And after the death of their mothers, these orphans face a harsh future, regardless of their own HIV-status. The fortunate are taken in by extended family members or find care in orphanages run by nongovernmental organizations and faith-based organizations. The unlucky ones, who have no one to care for them, become prey to crime and violence, or sometimes join the ranks of children who roam the cities and countryside and live a hand-to-mouth existence for as long as they can. A few go on to head their own households and care for younger siblings, typically sacrificing their own education and care in the process.
Even when relatives take them in, the care of the orphans is usually inferior to the care that their own parents would have offered. Most families who take in AIDS orphans do so without additional monetary support from social service organizations.
In poor countries, as in rich ones, education is a key to one’s opportunities in life. But the education of AIDS orphans in low-income countries falters so commonly as to be completely predictable. AIDS orphans get less schooling than other children. Even if enrolled in school, their attendance can be spotty, and academic achievement stymied. Not surprisingly, AIDS orphans also often have more psychological problems—including depression, post-traumatic stress disorder, peer-relationship problems, and delinquency—than other children.
In retrospect, it is now plainly apparent that the worldwide response to the HIV/AIDS pandemic has been “over-medicalized.” Most programs deliver medications that prolong adult lives and save infant ones. Programmatic success is measured simply by survival.
But what of the survivors themselves? A narrow focus on the death count has meant that services for survivors are severely underfunded (relative to medication expenditures) and usually delivered in a piecemeal way. There are also too few people trained to deliver such services. For example, in South Africa, a single social worker dealing with AIDS orphans may have more than 450 cases on his or her roster.
By these estimates and projections, over a fifth of South Africa’s children are already AIDS orphans—and that fraction will continue to rise in the years immediately ahead.
These millions of AIDS orphans who lack basic family and social care are more than just today’s humanitarian crisis: They are the prospective socioeconomic disaster of the future. Without support and education, these children will likely grow up to be less employable and more impoverished—and possibly more likely to engage in illegal activities—than children living free from the scourge of HIV/AIDS. Education and support for these survivors will become even more important as sub-Saharan African economies develop and their service sectors grow, and with it their need for more literate and numerate workers.
In paradigmatic terms, the answer to these pressing problems is clear enough: The goal of AIDS policy must move beyond survival outcomes to quality of life outcomes. In pure policy terms, the humanitarian aspect of the AIDS orphan crisis is obvious and relatively straightforward to correct: Increase social service support. All but a handful of PMTCT programs have medication delivery and adherence and infant feeding counseling as their core objectives. Ability to follow the outcomes of the mother-child pairs in PMTCT programs after birth and infancy is needed to ensure the wellbeing of both. Most importantly, in addition to medication, these people need food, water, a roof over their heads, social and psychological services, job security for adults, education for the children, and legal services, if necessary, to fight for jobs and land rights, and against AIDS-related discrimination.
But global public health resources are limited. And with limited resources, making the decision to improve the life prospects for some AIDS survivors perforce means depriving other potential victims of the very chance to live. This is the central ethical dilemma of PMTCT policy. There is no way around this dilemma—and no easy answer to it. Certainly there is no simple algorithm by which bean-counters in ministries of health or ministries of finance can make these trade-offs without qualms of conscience.
Until a cure for HIV/AIDS is found, the possibility for PMTCT programs to create orphans remains. Wherever these programs are implemented in advance of adult treatment programs, children whose lives are saved will continue to survive their infected parents. Global AIDS policy must recognize those unpleasant truths, and their implications. They are the starting point for what one may hope will be the conversation of conscience that the world’s AIDS orphans so desperately need.
Laura M. Kelley is a public health specialist who served in the intelligence community for many years. Nicholas Eberstadt holds the Henry Wendt Chair in Political Economy at the American Enterprise Institute.
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The unseen outcome of nearly 20 million AIDS orphans without strong social service support is not just today’s humanitarian crisis—it is the socioeconomic catastrophe of the future.
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