When we think about pediatric HIV in Africa, most of us probably imagine a ward filled with emaciated infants and children. That's one face of AIDS. One should also picture a rural hut where a 14-year-old girl is preparing a little mealie pap for her 10-year-old sister and feeding her infant brother a bottle containing weak tea. Or a spotless two-room concrete house where a woman is desperately trying to feed and care for nine of her grandchildren. In all three scenarios, the parents are eerily, achingly absent.
AIDS flourishes on ignorance, and for many years, some of the governments in heavily impacted countries and most of the governments in wealthy countries (including our own) ignored the global HIV epidemic. That's begun to change, and there is a growing consciousness of the magnitude of the human tragedy of the AIDS epidemic. It is estimated that more than 40 million people are living with HIV/AIDS worldwide.
Ninety-five percent of infected individuals live in low and middle income countries, particularly sub-Saharan Africa, and have not had access to the life-saving treatments that have become the standard of care in the United States and other high resource settings. Three million people died with HIV/AIDS in 2003 and 5 million more became infected. The epidemic continues unabated: 14,000 individuals are infected daily, 50 percent of whom are women, primarily young women in their childbearing years.
The impact on children in many African countries is catastrophic but has received little official attention. As many as 3 million children are thought to be HIV-infected and more than 2,000 become infected daily, primarily through mother-to-child-transmission (MTCT) during pregnancy, labor and delivery, or through breast feeding. Fifty percent of these children are likely to die during the first two years of life. In addition, more than 10 million children have been orphaned by HIV/AIDS, and it is estimated that the number will grow to 20 million in Africa alone by 2010. Twenty percent to 37 percent of children under the age of 15 years in 11 high prevalence African countries will have lost one or both parents by the end of the decade.
Policy-makers in those countries and international experts have been slow to respond as traditional mechanisms of coping with parental death have been overwhelmed by the number of children needing attention. In the past, family members provided a safety net for most orphaned children, and faith-based organizations established orphanages for the few without family. As HIV has destabilized the fabric of many communities and decimated generations within families, the extended family can no longer cope with the sheer number of orphans. The streets of many African cities are now filled with children with no family or social support.
The consequences of losing one or more parents have been studied in other settings. The most tangible effect is an economic one. Without a parent responsible for securing an income, money may not be available to cover the costs of basic necessities, food, housing and education. Children may be forced to leave school to help the family earn money or when school fees can no longer be afforded. Without education, the future for each of these children is increasingly dim. Regional food shortages have further exacerbated the difficulty of ensuring adequate nutrition during crucial periods of growth and development. Malnutrition contributes to the high rates of child mortality and puts these children at further risk for poor health outcomes. And the stigma surrounding HIV makes these children particularly vulnerable.
We are familiar with the intense individual psychological needs of children who lose parents and the life-long impact of such early losses. While coping with the economic and educational dislocation often brought about with parental death, children may have little opportunity to grieve. Furthermore, in the context of intense stigma, many families are unwilling to acknowledge HIV as the cause of illness and death, resulting in an atmosphere of secrecy and deception.
Depending on the developmental stage of the child, understanding of the situation may be very limited and often obscured by complex fantasies and explanations. Also, little attention has been given to the psychological consequences of "mass orphanhood" as currently experienced in many African countries. What are our expectations for the future in communities where more than 25 percent of the children are orphaned at an early age?
The MTCT-Plus Initiative offers one way of intervening in the orphan crisis. Coordinated by the Mailman School of Public Health, MTCT-Plus was established in 2002 to address the treatment and care needs of families affected by HIV/AIDS. The initiative supports the provision of specialized care to HIV-infected women identified in prevention of mother-to-child transmission (pMTCT) programs. Women enroll their children and partners into a program of comprehensive services including antiretroviral therapy and social and psychological support services. Maintaining wellness and preventing death in young families prevents orphanage placement and helps families maintain economic viability and hope. MTCT-Plus now funds 12 programs in eight countries with more than 3,000 participants, and the success of this model program will hopefully inform the larger scale roll-out of AIDS treatment programs throughout Africa, Asia and Latin America.
CUMC has tremendous expertise in many aspects of the lives of children and will hopefully be able to play a major role in developing programs that begin to meet the needs of the children who carry the burden of parental loss and economic dislocation. If we don't meet this challenge, many more generations will likely be lost.