Select Committee on International Development Minutes of Evidence


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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