Globally, between 2002 and 2013, there was a 58% reduction in the number of new HIV infections among children (under 15 years of age).1
However progress remains mixed, more than 240,000 children were infected with HIV during 2013 - around 700 new infections every day.2 In addition, millions more children every year are indirectly affected by the impact of the HIV epidemic on their families and communities.
There were 2.6 million children living with HIV around the world at the end of 2015 – the majority in Africa, where AIDS remains the leading cause of death among adolescents. Only 32% of children living with HIV were receiving antiretroviral treatment (ART).3 In 2013, 190,000 children died of AIDS-related illnesses.4
Regular HIV testing, treatment, monitoring and care for children living with HIV can enable them to live long and fulfilling lives. However, a lack of necessary investment and resources for adequate testing, paediatric antiretroviral drugs (ARVs) and prevention programmes mean children continue to suffer the consequences of the epidemic.
Why are children at risk of HIV?
Mother-to-child transmission (MTCT)
The majority of children living with HIV are infected via mother-to-child transmission, during pregnancy, childbirth or breastfeeding.
It is vital that children who were infected via mother-to-child transmission receive treatment to keep them healthy. Without antiretroviral treatment (ART), a third of children who are living with HIV will not reach their first birthday, and half will not reach their second birthday.5
With funding, trained staff and resources, new infections among many thousands of children could be avoided.
There has been a global decrease in the number of young people who report having sex under the age of 15.6 However, girls under the age of 15 can still marry with their parents’ consent in 52 countries around the world.7 This and other cultural norms lead to children becoming sexually active at a young age, or being subjected to sexual violence.
The lower the age of first sex, the higher the lifetime risk of HIV infection. This is because early sexual debut is often associated with older partners, higher rates of coerced sex and lower levels of condom use.8
Children who inject drugs
Global and national figures for the number of children under 15 who inject drugs are limited. This is despite studies reporting that some begin to inject drugs as young as age 10.9
Children who inject drugs are more likely to share needles and not access harm reduction services, due to age, making them more vulnerable to HIV infection.
Children who inject drugs are also more likely to be living on the street, orphaned, and out of school. Orphaned and vulnerable children are often marginalised in society, making it difficult to reach them with healthcare and HIV services.10
HIV infection in medical/healthcare settings
Although very rare today, HIV infection can occur in medical settings. For instance, through needles that have not been sterilised or through blood transfusions where infected blood is used.
It was reported in 2012 that over the past decade in Kyrgyzstan, 270 children have been infected with HIV in hospitals as a result of doctors not following universal precautions during medical procedures.11
Orphans and vulnerable children
One of the most devastating impacts of the HIV epidemic is the loss of whole generations of people in communities hardest hit by the epidemic. In this regard, it is often children who feel the greatest impact, with the loss of parents or older relatives.
An 'orphan' is defined by the United Nations as a child who has 'lost one or both parents'. Worldwide, it is estimated that 17.8 million children under 18 have been orphaned by AIDS, and that this will rise to 25 million by 2015. Around 15.1 million, or 85% of these children live in sub-Saharan Africa. In some countries which are badly affected by the epidemic, a large percentage of all orphaned children – for example 74% in Zimbabwe, and 63% in South Africa – are orphaned due to AIDS.12
HIV programmes focusing on orphans and vulnerable children (sometimes referred to as OVC) are a vital strategy for reducing vulnerability to HIV in children. These programmes focus on supporting carers of children, often older generations, keeping children in school, protecting their legal and human rights, and ensuring that their emotional needs are catered for.13
HIV prevention programmes for children
Prevention of mother-to-child transmission (PMTCT)
Preventing mother-to-child transmission (PMTCT) is one of the greatest HIV medical success stories. Administrating ARVs to mother and child keeps the mother healthy and greatly decreases the risk of passing HIV to the child.
Vertical transmission of HIV from mother to child can be virtually eliminated, as long as expectant mothers have access to PMTCT programmes. For many countries around the world, this is their most successful and important HIV prevention priority.
The 2013 World Health Organisation (WHO) guidelines for PMTCT of HIV state that countries must decide whether to offer all expectant mothers ART for life, regardless of their CD4 count after breastfeeding (option B+); or to offer ART during pregnancy and breastfeeding as a prophylaxis, and only continue ART after breastfeeding if their CD4 count drops below 500 (option B).14
Despite this medical knowledge, pregnant women's access to HIV testing and ARVs is lagging behind. During 2013, around 54% of pregnant women did not receive an HIV test, and were therefore unaware of their HIV status. Of those who did receive a test and were diagnosed positive, 7 out of 10 received the treatment for PMTCT. This helped avert 900,000 new HIV infections in children between 2009 and 2013.15
Breastfeeding is responsible for half of all HIV transmissions from mother-to-child. When formula feeding is not a viable option, women can greatly reduce the risk of transmitting HIV to their child if they exclusively breastfeed and are on treatment. However, only 49% of women continue to take antiretroviral drugs during the breastfeeding stage, compared to 62% of women during pregnancy and delivery, highlighting the urgent need for education about the importance of continuing treatment.16
Schooling and HIV education
Children should be given age-appropriate, culturally relevant, scientifically accurate and non-judgmental education and information about sex, HIV, AIDS and relationships.
The inclusion of sex and HIV & AIDS education for young children is vital for tackling the stigma surrounding HIV, and to teach others the facts about HIV transmission.17 HIV-awareness programmes are important to encourage openness about HIV rather than silence.18
There are many ways to reach young people; including through social groups, the media, and peer outreach - not just at school.
In addition, all children living with HIV have the right to attend school, just as any other child does. Policies need to be in place to ensure a child living with HIV at school is not subjected to stigma and discrimination or bullying, and that their status is kept confidential.19
Children and adolescents are sharing an increasing burden of the global HIV epidemic. HIV prevention programmes can tackle this issue by ensuring children's rights within society are granted. This includes the right to education, contraception, involvement in HIV programmes, safety from violence, gender equality and a lack of stigma.20
Preventing child marriages
Globally, around 11% of young girls are forced into marriage before the age of 15. This puts young girls at risk of HIV, as they may be unable to negotiate condom use, or prevent sexual violence. Early motherhood also risks a young girl who may not know her HIV status passing HIV to her baby.21 HIV prevention programmes need to reach young girls who are forced to marry early.
Family support for children living with HIV
Kinship structures are already strong in many African countries where children are most affected by HIV. As a result, families often provide a more long-term, stable form of care for a child who is living with HIV, or has been orphaned by AIDS, than an institution or care programme.22 It has been emphasised that taking children away from their families should be a last resort, as families are more likely to be a source of emotional support.23
Supporting a family holistically can be the best way to ensure a good quality of life for the child. This should include social protection schemes that provide external assistance to poorer families in areas where HIV prevalence is high. Such schemes are now seen as a valuable part of improving the lives of children affected by HIV.24
Financial support for children living with HIV
Reduced household income combined with increased expenses (for example for treatment, transport, funerals) can push families into poverty, which has negative outcomes for children in terms of nutrition, health status, education and emotional support. By reducing a household’s economic vulnerability, children benefit from better nutrition, the opportunity to go to school instead of work and better access to healthcare.25
A successful social protection measure is a cash or income transfer. These are cash disbursements to individuals or households identified as highly vulnerable. The number of these programmes doubled in Africa between 2000 and 2012, supporting US$10 billion worth of transfers during this period.26
To ensure that children are the focus of these transfers, some programmmes have conditions. For example, one programme in Ghana requires households to keep children in school, register with the National Insurance Scheme, and bring children to health facilities for regular check-ups.27
HIV testing for children
The 2013 WHO treatment guidelines state that infants born to women living with HIV should be tested for HIV within two months.28 However only 42% of infants were tested under these guidelines during 2013.29
It is essential that infants are then re-tested for HIV when they cease breastfeeding, because breastfeeding can be a route of HIV transmission from mother to baby.30 Many HIV-positive children in low and middle-income countries remain undiagnosed. For example, one estimate from Kenya suggests that only 40% of children with HIV are diagnosed.31
Although HIV testing in children at health facilities is recommended by WHO, it is not well implemented. Screening children for HIV at inpatients sites and nutrition clinics, alongside testing in the context of PMTCT programmes, provides the best opportunities for diagnosing HIV infections in children that might otherwise go undetected.32
Barriers to HIV testing for children
Investment into point-of-care technology needs expanding, to enable infants to be diagnosed at the clinic they attend, enabling them to start treatment as soon as possible.33 Starting treatment early has shown to have greater long-term health benefits.34
In many rural, inaccessible areas, HIV testing is simply unavailable. Healthcare professionals must use clinical diagnosis instead, to ascertain the child’s HIV-positive status. Unfortunately this results in a lot of infections going undetected.35
Access to antiretroviral treatment for children
WHO 2013 treatment guidelines state that all children below the age of five who are diagnosed with HIV should begin antiretroviral treatment (ART) immediately, regardless of CD4 count.
When this happens, the likelihood of death for a child living with HIV declines by 75%, but only if the child is given ART within its first 12 weeks of life.36 Nonetheless, 76% of children who could be benefiting from this therapy in low and middle-income countries are not receiving it.37
Children ideally need to be given drugs in the form of syrups or powders, due to the difficulty of swallowing a tablet. However, they are more expensive. As a result, carers often break adult tablets into smaller doses, running the risk that children are given too little or too much of the drug.38
Barriers to HIV prevention, treatment and care for children
Antiretroviral treatment adherence
Children have to take antiretroviral treatment (ART) on average 20 years longer than adults do, heightening adherence issues. As more children are growing older with HIV, the vastly inadequate services for older children are coming to light.
This includes the complexity of adhering to treatment whilst going through puberty when children want freedom not strict medical regimes, confusion around ARV regimes as they grow out of child treatments and into adult ones, and a lack of targeted services for age groups that do not fall strictly into ‘children’ or ‘adults’.39
Globally, around 80% of children are retained on treatment at 12 months - almost equal to the rate among adults.40
Loss to follow-up
Many children simply stop turning up for healthcare check-ups to receive treatment. A study involving 13,611 children from low-income countries in Asia and Africa found that at 18 months after initiation of ART, 5.7% had died, 12.3% were lost to follow up, and 8.6% had transferred to other clinics. Loss to follow up was much greater in West Africa (21.8%) compared to Asia (4.1%).41
Children are more vulnerable to being lost to follow up than adults because they rely on their parents or caregivers to gain access to healthcare services.42 Some of the reasons children are lost to follow up include lack of caregiver contact information, stigma and counselling challenges, the burden on patients to return for results, and weak follow-up within clinics.43
Antiretroviral treatment costs
Although the cost of first line therapy for children has reduced dramatically due to the availability of generic drugs, if a child develops drug resistance and needs to begin a second course of drugs, treatment becomes far more expensive.
WHO qualifies new antiretroviral drugs suitable for children regularly, but without access to cheap generic versions of them the majority of children living with HIV will not benefit.44 The incentive for pharmaceuticals to develop paediatric drugs is also diminishing as the number of infants born HIV-positive is declining rapidly.45
Many caregivers delay telling a child about their status, because they are anxious about the child's wellbeing, are concerned about being blamed, and are worried about stigma from the community.
It is important for a healthcare worker or carer to disclose a child's status to them, to prevent the child feeling isolated and finding out their status accidentally, or in public. It is thought that disclosure gives a child greater mental stability and health.46
Many children living with HIV experience tough life events that could affect their psychosocial wellbeing, such as losing caregivers to AIDS-related illness, stigma, shock about their status and not understanding the importance of adhering to treatment.
To mitigate these events, it is important to encourage children to have a positive outlook on life, which can be helped by making full use of services such as support groups.47
Childhood illnesses, such as mumps and chickenpox can affect all children, but since children living with HIV have weakened immune systems they may find that these illnesses are more frequent, last longer, and do not respond as well to treatment.
An estimated 74,000 children died from tuberculosis (TB) in 2012. However, this number is thought to be much higher as many countries only report HIV as the underlying cause of death, with tuberculosis as the contributory cause.48
The future of the HIV epidemic among children
Children are disproportionately affected by the HIV epidemic, and continue to be left behind in the provision of life saving antiretroviral treatment. Considering the success rates of providing a pregnant woman with ARVs to prevent mother-to-child transmission of HIV, it is unfortunate that not all pregnant women living with HIV are benefitting from these drugs.
Moreover, testing and treatment opportunities for children need to be scaled up to bring them in line with the adult population.
Alongside this, there needs to be greater access to the drugs that can prevent mother-to-child transmission, appropriate testing, efficient linkages to care and treatment, and support for the families and communities that provide the material, social, and emotional foundation for a child’s development.
Photo credit: ©AVERT by Corrie Wingate. Photos are used for illustrative purposes. They do not imply any health status or behaviour on the part of the people in the photo.
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