Findings

The Response

Determined leadership and sustained investment have made, and can continue to make, an extraordinary difference and will save millions of lives.

Leadership matters. Amidst the tragedy of AIDS, there is hope.  Uganda has shown that even a country with limited resources and a low literacy level can turn the tide on this burgeoning epidemic. President Museveni demonstrated bold leadership early in the epidemic by making every government ministry take the problem seriously, requiring them to develop and implement a plan to reduce AIDS stigma and HIV transmission, and to support those who became sick.  In so doing, Uganda created an “enabling environment” for donors to assist in this effort. Over the past decade, the US has invested $46 million (26% of the donor contributions to AIDS in Uganda) in partnership with the Ugandan government, other donors, and non-governmental organizations (NGOs) to provide HIV prevention, care and support.  As a result, HIV rates in urban Uganda have been cut in half.

Effective solutions for children orphaned by AIDS are community-based and multi-sectoral. Families and communities not only bear the brunt of the impact of AIDS, they form the frontline of an effective response. In the long-standing African tradition, communities across the continent are searching for creative ways to support the village in its efforts to raise its children.  Unfortunately, the growing number of young deaths and orphaned children is beginning to overwhelm many of these small villages. Nevertheless, when residents are brought together to organize in the face of seemingly insurmountable odds. These community partnerships are making the difference by helping to strengthen the capacity of those on the frontline to cope with this ever unfolding crisis.

Through village banks and micro-finance programs, women are receiving loans, starting small businesses, and with increased household incomes, are taking in children orphaned by AIDS.  With support, communities are mobilizing to deal with school fees, food assistance, counseling, material support, immunizations and basic healthcare, and the range of other services orphaned and other vulnerable children desperately need.

These efforts are low cost strategies designed to empower women (many of whom are HIV-positive), protect children, and support extended families and communities in caring for their own. Community mobilization and micro-finance programs are affordable, mutually reinforcing ways to build the capacity of families and communities to cope with the impact of AIDS. This approach is universally preferred to the use of orphanages, a solution that can never keep pace with this burgeoning pandemic. For a small fraction of the cost of one orphanage bed, many more vulnerable children can receive care in a family setting. The problem is, only a very tiny fraction of those children in need actually receive even this modest level of support.

Bernadette Nakayima is a remarkable woman from a small village called Kyahusome outside of Maskaka, Uganda.  Bernadette has lost 10 of her 11 adult children to AIDS.  Today, at age 70, she is caring for her 35 grandchildren.  With loans from a village banking system, she has begun growing sweet potatoes, beans, and maize, raising goats and pigs, and trading in fish, sugar, and cooking oil.  With the money she earns, she is now able to send 15 of her grandchildren to school, provide modest treatment for the 5 who are now HIV-positive, and begin construction on a house big enough to sleep them all.  In her spare time, she participates in an organization called “United Women's Effort to Save Orphans” – founded by the First Lady of Uganda, Janet Museveni - linking in solidarity thousands of women allied in this same great struggle.

A focus on children orphaned by AIDS can and should be a catalyst for a more comprehensive fight against AIDS.  It is almost impossible to consider the issues surrounding the care and protection of children orphaned by AIDS without also considering HIV prevention and AIDS treatment.  It is certainly true that the only way to slow the number of children orphaned by AIDS is to reduce the transmission of HIV infection among parents and prospective parents. Yet today, young people under the age of 25 represent at least 60% of all new infections in sub-Saharan Africa.  Until there is an available vaccine, more aggressive prevention efforts, particularly programs targeted to youth, are essential to stem this rising tide of devastation.

Community action to save orphans can help to facilitate effective prevention efforts by reducing stigma, denial, and fatalism in the face of AIDS.  Planning for children orphaned by AIDS brings home the very real consequences of HIV – death and orphanhood.  These grim realities are all too often denied due to the “conspiracy of silence” that surrounds this illness and its long latency period.  But this is a matter of life and death and more.  Once denial fades, community mobilization enables those involved to believe that they can change their circumstances for the better.   This sense of possibility is a powerful behavior change tool.

Helping keep parents alive assures a better future for their children.  The number of children being orphaned by AIDS in Africa is staggering, and those children orphaned are at greater social, economic and health risk than their non-orphaned peers.  Parents, guardians, and extended families are best able to provide the nurturing environment for these children.  Basic care and psycho-social support can make a huge diffference. The delivery of low cost treatments for opportunistic infections (especially TB), and the provision of psycho-social support, helps people with HIV and AIDS live longer and better lives, and enables them to plan for the future of their children.  In addition, the availability of care and support gives increased credibility to prevention efforts by demonstrating the merits of pursuing HIV testing and counseling. 

Preventing Mother-to-Child Transmission Ten percent of all new HIV infections in Africa occur through mother-to-child transmission, with nearly 600,000 infants becoming infected per year.  In Africa today, for every ten children born to HIV-positive mothers, two become infected during delivery and one becomes infected through breastfeeding.   Developing methods to reduce mother-to-child transmission of HIV that are feasible in Africa is a high priority.  For the past three years, multiple studies have been initiated to find proven interventions that could be workable in poor countries.  In February 1998, data from the first of these studies were released from Thailand, which demostrated that a short course of AZT (Zidovidene) could reduce mother-to-infant HIV transmission by nearly 40% in non-breastfeeding infants.  Even more recently, on July 14, 1999, the National Institutes of Health announced a joint Uganda-US study breakthrough identifying a low cost drug, nevirapine (NVP) that can reduce mother-to-child transmission of HIV at birth by an additional 50% as compared to the short course of AZT regimen.  These drug regimens are far simpler and less expensive than the antiretroviral regimens used in the United States, and potentially just as effective.  These new interventions will give pregnant women an incentive to seek HIV testing and counseling, and if infected, to receive treatment where it is available. These new developments are extremely encouraging and provide hope for being able to save the lives of hundreds of thousands of babies a year – most of whom will live in sub-Saharan Africa.  However, a host of additional issues need to be explored and addressed before this knowledge can be effectively translated into productive action.  For example, to receive maximum benefit from AZT and perhaps NVP, mothers should not breastfeed.  In many areas of sub-Saharan Africa, infant formula is unaffordable and lack of clean water often makes it unworkable.  In some cases, babies are as likely to die from diarrhea resulting from incorrect use of formula as they are from AIDS. The lack of health care infrastructure is also a serious issue.  At least 95% of pregnant women do not know they are HIV-positive and currently lack access to the testing and counseling services needed to find out.  In many areas, most women deliver their children with the assistance of midwives in their homes, or in makeshift clinics currently unequipped for complex interventions. In the poorest parts of Africa, nearly 80% of women lack access to any kind of health care at all. Further, the stigma of AIDS is often so great that fear of discrimination, violence and abandonment dramatically restrict the ability of women to make safe choices.  In cultures where breastfeeding is the norm, women who choose not to breastfeed are assumed to be HIV-positive, often with dire consequences.  Recently, an HIV-positive woman in South Africa went public with her status and was stoned to death by her neighbors.  Countless other women and children have been left destitute after their husbands discovered, or decided, they were HIV-positive.These technical and ethical challenges deserve our immediate and urgent attention, so that the promise of these exciting new technologies can become a reality for as many women and children as possible.

Ultimately, it is important to remember that children and families caught in the crossfire of this epidemic do not segment their lives into pieces that follow programmatic or budgetary line items. Therefore, the more holistic and integrated the approach to this complex problem – the more effective the result.