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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.
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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.
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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.
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