Memorandum submitted by Save the Children
UK
THE IMPACT
OF HIV/AIDS ON
CHILDREN
Despite almost two decades of the global HIV/AIDS
pandemic governments, donors and many NGOs are still reluctant
to acknowledge that protecting children from HIV and providing
care and support for children affected by AIDS is one of the most
important development challenges today. Young people, especially
girls who do not have access to formal education, still display
the highest rates of new infections world-wide. Young people are
still denied access to appropriate information, health services,
family planning support, while simultaneously being vulnerable
to exploitative situations including sex work, sexual abuse and
cultural controls over sexuality.
The impacts of HIV/AIDS on children relate to
both increasing cases of paediatric AIDS as well as children surviving
with HIV infection, and children who are HIV-negative with seropositive
parents. In Uganda, projections claim that AIDS may increase infant
mortality by 75 per cent and under-five mortality by more than
100 per cent. Paediatric counselling services for these children
are virtually non-existent, and this is resulting in poor standards
of health care as well as more and more children displaying behavioural
and depressive disorders. For children whose parents die prematurely
it is often assumed (falsely) that they also are HIV positive,
resulting in reduced access to food, education, health care and
family support. In some affected countries up to one third of
children have now lost one or both parents. It is an unprecedented
and untenable situation, demanding a rapid and considered response.
AIDS impacts on the workforce and household
income, and the inability of infected adults to undertake care
responsibilities places enormous strain on children. Numbers of
child headed households are increasing dramatically, and this
impacts on a whole range of issues from access to education, to
increased poverty and its attendant factors. In many countries
the legal rights of orphans are unclear or non-existent, leaving
them vulnerable to a range of abuses.
RECOMMENDATIONS TO
DFID
Promote the inclusion of children into National
Strategic Frameworks, and HIV policies.
Ensure children's participation in programme
development in order to improve design relevance and impact.
Move away from seeing children only as passive
and focus on the role they can play in seeking responses to HIV/AIDS
as caregivers within families/communities and as peer educators
to youth in and out of school.
Promote cost effective school-based preventative
information and life skills programmes for primary and secondary
school children; the most effective responses to the pandemic
target children at an early age including pre-pubescents.
Factor concerns related to the marginalisation
of children affected or infected by HIV/AIDS in to long term HIV/AIDS
strategies. Dealing with the impact of AIDS on children today
is fundamental to a country's future economic and social development.
Adopt a multi-sectoral approach rather than
one which treats HIV/AIDS primarily as a health issue.
Promote (in collaboration with the Department
of Trade and Industry) increasing corporate involvement in HIV/AIDS,
and focus on HIV as part of corporate sector social responsibility
in relation to employees, their children and the wider social
environment.
Ensure that World Trade Organisation negotiations
take account of the right to equitable, affordable and quality
health care for all, rather than prioritising the interests of
the multinational pharmaceutical industry.
Support investment in government health services
to ensure effective delivery, availability and treatment protocols
with regard to free supplies of drugs for treating of HIV-related
infections.
Save the Children UK
May 2000
SAVE THE CHILDREN UK POLICY PAPER: HIV/AIDS
INTRODUCTION
Save the Children Fund is committed to lasting
benefits to children through current work on HIV/AIDS. SCF UK
aims to promote the prevention of HIV/AIDS and sexually transmitted
diseases (STDS) with young people, and to alleviate the impact
of HIV/AIDS on children and young people affected as a result
of the pandemic, which includes children living with the virus.
The key articles in the UN Convention on the
Rights of the Child that guide SCF UK's work on HIV/AIDS include:
Article 6, the right to inherent life; Article 29 and 17 on the
provision of information and education; Article 12 and 2 on freedom
of expression and non-discrimination; Article 19 on child protection;
Article 24 on the right to health, treatment and rehabilitation;
Article 20 and 27 on the rights to basic needs and quality care
after loss or separation from family or carers.[9]
1. Summary of the problem
Over 30 million children and adults are estimated
to be living with the virus. If current trends continue, by the
year 2000 the number of people living with HIV/AIDS will reach
40 million globally. UNAIDS and WHO estimate that 5.8 million
people became infected in 1997, at a rate of 16,000 new infections
a day. 90 per cent of HIV cases are sexually transmitted2-HIV
is a global problem. The problem is not simply confined to poorer
nations, it is a problem for all nations. There is often a failure
to recognise this fact in the North.
60 per cent of new HIV infection is in the 15-24
year old age group which indicates the vulnerability of young
people. Over half of the World's population is under 25 and over
half of the world's population will have had unprotected sex before
the age of 183. Increasing intravenous and recreational drug use
also contributes to HIV infection in young people.
According to UNAIDS 90 per cent of infants living
with HIV contracted the virus from their mother. More than eight
million children have lost mothers to HIV/AIDS. Approximately
8 per cent of children at risk of being orphaned are HIV positive.
UNAIDS estimates cumulative HIV infections reported among children
as 2.6 million to date, with 1.4 million deaths up until 1996.
SCF UK recognises that many factors contribute
to the spread of the virus. These are firmly rooted in: poverty—both
micro and macro-economic, social deprivation, gender inequity,
cultural attitudes and behaviour, under-resourced health, education
and welfare services, conflict and war, the movement of people
and growing urbanisation, a lack of preventive education and services
to the 10-19 year old age group, discrimination, and a lack of
political and legal commitment. The impact of the HIV/AIDS pandemic
affects all levels of society. As a result, it is expected that
over the next five years, in the poorest areas of the world there
will be a crisis as public and livelihood systems break down.
There is no cure for AIDS. Despite the development
of retro viral drugs which delay the onset of AIDS and which can
reduce mother to child transmission, there is little respite for
people living with the syndrome. It is anticipated that it could
take another 10 to 15 years to develop a preventive vaccine. Meanwhile
HIV continues to spread virtually unchecked, particularly in the
poorer nations of the world where 90 per cent of current HIV infection
is located.
1.2 The problem for children, young people and
women
Children are "the window of hope"
in arresting the HIV/AIDS pandemic, but often HIV prevention is
not seen as a priority or children are targeted too late: There
is evidence that first sexual experience globally occurs between
seven and 15 years. First sexual experience usually occurs without
protection against HIV/AIDS or pregnancy. This factor is not considered
when targeting young people. For many children HIV preventive
education is received after they are sexually active or using
drugs.
The majority of children are denied access
to services to protect themselves from HIV/AIDS: HIV preventive
information is ineffective unless supported by services which
young people can access for further information, the means to
protect themselves against HIV, STDs, pregnancy, drug use, and
to receive treatment for any existing infections. Most reproductive
health services are not sensitive or appropriate for children.
Where there are charges for services most people, including young
people will not be able to pay.
Globally epidemiological data are not available
on HIV/AIDS for the 5-9, 10-14 and 15-19 year old age groups of
children and as a result children are not prioritised for HIV
prevention: To argue the case for HIV prevention for children,
it is necessary to highlight data on age of first sex, teenage
pregnancy, incidence of sexual abuse and exploitation, and cite
specific case studies, and anecdotal evidence. This is because
children are at risk of sexual transmission of HIV from a very
early age. Existing HIV prevalence data are not disaggregated
by age and sex for children. This information is vital to make
HIV prevention a priority with policy makers and practitioners.
Women and girls are biologically and socially
more vulnerable to HIV/AIDS but HIV prevention often lacks a gender-sensitive
approach: For every four men living with HIV, six women are
living with the virus. Young boys and girls are also biologically
more vulnerable through unprotected anal sex with other young
boys and men. Women and girls are especially vulnerable to HIV
as a result of power imbalances between men and women. These imbalances
can result in HIV transmission associated with social factors
such as early marriage and sexual relationships for girls, the
ability of women and girls to negotiate safe sex, and the endorsement
of many sexual partners for men, while women and girls are required
to remain monogamous. Young boys are also socially more vulnerable
to HIV infection through sexual relationships and abuse by men
and older boys. Current HIV prevention efforts often do not address
the underlying social factors that put women, girls and boys at
particular risk to HIV infection, neither do they provide the
skills essential to help women, girls and boys to negotiate either
a delay in sexual activity or safe sex.
There is a limited recognition that the protection
of women and girls from HIV is the key to the prevention of mother
to child transmission: Many interventions concentrate on the
protection of children after the mother has contracted the virus.
These interventions are often prioritised at the expense of stressing
the need for the prevention of HIV in women and girls in the first
instance as the most effective way of protecting children contracting
the virus from mothers. Where HIV prevention exists for women,
girls are marginalised. Interventions that target HIV positive
women in the protection of unborn children from HIV exclude young
mothers, therefore ignoring the fact that 10 per cent of mothers
are teenage girls.
Groups of women and children who are socially
and politically marginalised need not only HIV prevention, but
protection from HIV: For many of these women and children
HIV prevention and care is not seen as a priority. Even where
HIV prevention is provided it is unlikely that young people will
be able to delay sexual activity or that women and girls will
be able to negotiate safe sex. Their range of choice is limited.
The reasons for this include: 1. Economic poverty. 2. When sex
is non-consensual and women and children are sexually abused,
but their social position makes them difficult to reach for protection.
3. Where social and economic control over women and girls is used
for the economic gain of other adults. [Examples include refugee
and displaced women and children, child workers, women and children
using drugs, street children, sexually abused and exploited women
and children, boys who have sex with boys and men, children in
institutions, disabled children, and abandoned and orphaned children.]
In the poorest parts of the world, the response
is inadequate for women and children living with the virus: Women
and children living with the virus lack access to quality diagnosis,
care, treatment, support and prevention. They are not involved
in services sensitive to their needs and often cannot afford to
pay for them. Community models of care continue to be hampered
by ongoing stigmatisation and discrimination associated with HIV/AIDS,
and there are inadequate links with the public sector. Women and
children often lack legal support at both traditional and national
level to cope with impact of HIV/AIDS on family and community,
particularly after the death of spouses and parents.
In most societies women and children are
most vulnerable to HIV infection yet often they carry the major
burden of care and support: Evidence to date indicates that
women and girls take on the role of caring for the sick. In some
instances men also act as carers. When relatives are dying from
AIDS the burden of care can become particularly acute for women
and children, especially when they are also living with the virus.
There is a need for more information about the impact that caring
for relatives living with HIV/AIDS has on children and families
in order to develop programmes sensitive to their needs. Discrimination
against families living with the virus often means families keep
HIV diagnosis secret and often feel unable to ask for the extra
care and support needed from other family and friends.
The number of children orphaned as a result
of HIV/AIDS challenges the ability of communities to cope: In
poorer areas of the world many children lack access to basic needs,
social care and support, psychological support, protection, legal
advice and legislative support. However, communities affected
are less able to provide even basic needs for orphaned children
adequately. The situation becomes worse as communities gradually
lose the economically productive age group to HIV/AIDS. Many community
interventions to date have failed to indicate how children orphaned
as a result of HIV/AIDS benefit from these programmes. There needs
to be a better understanding on the coping strategies of children
and families as a result of the impact of AIDS, and there is a
need to develop programmes which benefit children, in a way that
is locally, culturally and socially relevant.
The capacity of welfare and health systems
are challenged when children are needlessly institutionalised
as a result of HIV/AIDS: Children are sometimes sent to institutions
when living with HIV, or abandoned and orphaned as a result of
HIV. Children are also vulnerable to contracting HIV in some institutions
through sexual abuse and intravenous drug use. Research to date
indicates that children would prefer not to be institutionalised,
but would rather remain with family or community. In the health
sector of many poor areas, there are often no drugs or treatments
for children living with the virus. Abandoned children can be
adopted and fostered, but there is a reluctance to do this when
they are associated with HIV. SCF UK does not promote the institutionalisation
of children unless the circumstances are exceptional. Children
living with the virus, or orphaned as a result of the virus, need
to remain with family and community if they express the desire
to do so. Children in institutions need HIV prevention and protection
from the virus.
1.3 The problem of HIV/AIDS for the different
areas of SCF UK's work
The incapacity of health, education, welfare
systems: Interventions on HIV/AIDS are expensive. In the poorer
parts of the world, health, education, welfare systems have collapsed.
HIV/AIDS profoundly exacerbates this situation. Nations heavily
affected by HIV will become poorer and as a result more children
will die either as a direct or indirect result of the HIV pandemic.
The capacity of community and livelihood
systems are overwhelmed by the impact of HIV/AIDS: As a result
of the incapacity of existing health, education and welfare systems,
there has been a tendency to fall back on communities to provide
care and support to people living with HIV/AIDS. However, the
coping mechanisms of poorer communities are severely challenged
in countries where HIV prevalence is high. The livelihoods of
many families, particularly those living in situations of poverty
already, are severely compromised. In these situations HIV/AIDS
could become an emergency as it impacts on public and livelihood
systems. There is a need to provide a better understanding of
the development of this potential crisis and to plan in advance
for it.
The lack of priority given to HIV/AIDS in
Emergency and Conflict Situations: Conflict and emergency
situations result in a breakdown of social systems that favour
HIV transmission which include sexual violence and abuse, social
and economic exclusion of refugee and displaced people, and a
lack of priority on HIV/AIDS interventions in emergency and displaced
settings. Women and children are particularly at risk of infection.
HIV/AIDS prevention, care and protection responses are limited
and seldom prioritised in emergency settings.
1.4 The International Response
The international response to HIV/AIDS has almost
totally neglected children and young people with the exception
of infant cases. Almost 20 years into the epidemic prevention
efforts are only beginning in some countries. There is a failure
to recognise the magnitude of the impact of HIV/AIDS on resource-poor
countries and societies, especially where HIV prevalence is high.
The international response to date is focusing on interventions
which are small scale in global terms, urban biased, unsustainable
and will benefit only a few children and families. Many donor
agencies do not recognise the vulnerability of, or prioritise,
children and young people in relation to the spread and impact
of HIV/AIDS. International policy designed to benefit some children
from contracting the virus may kill many other children if adopted,
for example current infant-feeding policy. Frameworks and guidelines
designed to assist national infrastructure to prioritise children
and rights issues in HIV prevention and care are technical, cumbersome
and unlikely to be used. Most HIV programmes are poorly designed,
implemented and evaluated and it is difficult to see how children
benefit. There is a recognition that behaviour change programmes
are not working as effectively as they could and it is envisaged
that there will be a return to scientific research in the hope
that current retro viral therapy can be improved, or that preventive
vaccines can be designed.
2. Policy
2.1 The prevention, care, support and protection
of children and young people, especially girls, living in a world
with AIDS is inadequate. It is SCF UK policy to put the prevention,
care, support and protection of children on the agenda of policy
makers and practitioners by:
(i) demonstrating that children and young
people between the ages of seven and 19 are the most vulnerable,
unsupported, and marginalised group in HIV/AIDS prevention and
care and challenging the situation where it is not recognised;
(ii) promoting the prevention of HIV/AIDS
with children and young people as a means to protect the social,
economic and political security of all nations;
(iii) challenging the situation where young
girls and adolescent mothers do not have the same access and quality
of support as older women in the prevention of mother to child
transmission or for reproductive health services;
(iv) ensuring that HIV prevention is targeted
at the earliest age and that all children, especially girls, are
equipped with the skills to negotiate safe sex;
(v) ensuring that women, children and families
are involved in services relevant to their needs in the care of
HIV infection;
(vi) challenging the situation where children
are needlessly institutionalised or are not afforded normal welfare
provision when abandoned as a result of HIV, and promoting the
need for the protection of children within and outside institutions
from contracting the virus;
(vii) ensuring that children are included
in HIV/AIDS programme design, implementation and monitoring and
evaluation;
(viii) analysing the impact of HIV/AIDS work
and its benefits to children;
(ix) responding to the area of children,
young people, and AIDS as an emerging field internationally by
developing and promoting approaches to programme; advocacy, research
and policy work by learning from experience, and using this experience
to influence national and international policy makers and practitioners.
2.2 HIV/AIDS is not simply a health issue,
it is a broad development issue. The impact of HIV/AIDS compromises
children's rights and affects every aspect of life. The response
to HIV/AIDS needs to involve all areas of SCF work. It is therefore
SCF policy to:
(i) challenge the root causes of HIV/AIDS
by tackling poverty, economic and social exclusion, gender inequality,
and discrimination in all SCF UK's work;
(ii) demonstrate ways to integrate HIV/AIDS
into areas of SCF work where HIV/AIDS is not represented and to
analyse the impact;
(iii) promote and strengthen the existing
HIV components of SCF work;
(iv) promote and facilitate the links between
health, education and livelihoods as a means of challenging the
spread and impact of HIV/AIDS, but in an appropriate way by using
existing resources and capacity;
(v) share the practical experience gained
to influence national and international policy and practice.
2.3 SCF UK recognises that the needs and
rights of children in many poor countries of the world are compromised
by the lack of capacity and commitment in health, welfare, education
and livelihood systems, including the private sector, in the ability
to provide relevant and sensitive HIV/AIDS prevention, care and
support. It is SCF UK policy to:
(i) illustrate how the collapse of support
systems to children and families are made worse by the impact
of HIV/AIDS and to encourage and facilitate local and national
responses from public, private and NGO sectors, and communities;
(ii) promote and develop appropriate HIV
interventions by facilitating optimum use of existing resources
and approaches to target as many children as possible with information
and services for HIV prevention;
(iii) analyse the impact of HIV/AIDS on the
livelihoods of communities to make provision for and plan for
a response to declining coping mechanisms and strengthen the capacity
of communities to cope;
(iv) strengthen the role of the private,
traditional and community sectors in the prevention and care of
HIV/AIDS for children and families and analyse the effectiveness
of the response;
(v) ensure that relevant and sensitive services
are promoted for HIV/AIDS prevention and care with women and children;
(vi) develop and promote interventions that
include people living with the virus and ensure that they are
involved in HIV/AIDS programme planning, design, implementation
and monitoring, impact assessment and advocacy.
(vii) develop and assess the effectiveness
of HIV/AIDS programmes which challenge discrimination and stigmatisation
in current HIV/AIDS prevention, care and support work;
(viii) use SCF UK practical experience and
research from the field to analyse and draw attention to the current
gaps in international and national policy and practice.
2.4 SCF UK considers that HIV/AIDS should
be an integrated part of the response to the rights and needs
of children in emergency and conflict situations, particularly
where HIV prevalence is high. SCF HK will therefore:
(i) make provision for and respond to the
impact of HIV/AIDS at the planning stage of any response in situations
of conflict and calamity;
(ii) will advocate through practice and work
with other agencies that the response to HIV/AIDS is beyond the
confines of health interventions, taking into account sexual violence,
sexual abuse, sexual exploitation, and the specific problems of
children and young people in relation to HIV/AIDS prevention and
care;
(iii) seek to improve the lives of children
and young people in refugee and displaced populations by affording
them the necessary HIV preventive support and care;
(iv) use the experience gained world wide
to influence a wider international audience.
2.5 SCF UK acknowledges the impact of HIV/AIDS
on staff and the employees of partners. SCF UK is committed to
the principles of non-discrimination and confidentiality in staff
health issues and supports the integration of these principles
into other relevant organisational policy in relation to HIV/AIDS
within SCF UK.
9 For a summary of the Articles and the relation to
the situations of HIV/AIDS and Children see Annex. Back
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