The noted children’s human rights lawyer, Michael Freeman, posed the provocative question
of whether the world viewed children as “beings or becomings?” (Freeman, 2015). This
encapsulates some of the challenges and dilemmas in the way children infected or affected
by HIV are served. Narratives around “investing for the future” and “tomorrow’s generation”
are in line with an idea that children are becoming adults, becoming human – but obscure
their current needs and understate the place of children as current active agents.
An equity focus, as called for in this special issue of AIDS Care, would support the
needs of children as beings. The end of 2015 saw the end of the Millennium Development
Goals (MDGs), and achievements inclusive of substantial reduction of mother-to-child
transmission (MTCT) of HIV, prevention of HIV and decrease in HIV incidence as well
as expansion of HIV treatment and care programmes globally, but in particular in the
most-affected countries of Sub-Saharan Africa (SSA). Yet there are situations where
outcomes for children are wanting. These include the unacceptably high 30% MTCT in
the Democratic Republic of the Congo (Edmonds et al., 2015; United Nations General
Assembly Special Session [UNGASS], 2014) where decentralisation has not ensured higher
proportions of pregnant women receiving the full package of interventions at antenatal
care, Zimbabwe struggling to reduce national vertical transmission rates to under
5%, being 9.6% in 2013 (UNAIDS, 2014a) and Burundi’s modelled at 24.5% (UNGASS, 2015).
Children continue to lag in the equity response, with, compared to adults, fewer children
on treatment, 76.9% of adults versus 46% of children in Zimbabwe and 12% in Burundi
(UNAIDS, 2014a). It is also notable that fewer children are tested for HIV, and that
children receive consistently fewer mentions or considerations in plans, policies
and future agendas (Sherr, Cluver, Tomlinson, & Coovadia, 2015). Even those organising
the 2016 high-level UN meeting's civil society consultations forgot that children
were part of civil society. Newer antiretroviral treatment (ART) drugs are not formulated
for children, making administration and ultimately adherence even more of a challenge.
Young girls remain disproportionately affected by HIV compared to boy children (Singh,
Rai, & Kumar, 2013).
In 2014, 220,000 (190,000 in SSA) children below the age of 15 years were living with
HIV globally, nearly all of whom became infected through MTCT. The prevalence of HIV
among pregnant women varies from less than 1% in resource-rich settings of Western
Europe, America and Asia to over 40% in some areas of southern Africa (UNAIDS, 2014b).
Although the UN has prioritised the virtual elimination of vertically-acquired HIV,
the complex machinery and interplay of policy, implementation and review needs to
be further expanded for this final goal to be met – achievable as evidenced by the
dramatic downturn of children infected at birth as recorded in many settings.
By March 2015, 15 million people had been initiated onto ART globally, nearly 11 million
in SSA; it is unclear how many remain on treatment and how many of these are virally
suppressed. About 40% of HIV-infected adults were estimated to have accessed ART,
but only 32%, or even less, of children; in 2014 nearly three-quarters of pregnant
women living with HIV had access to ART for the prevention of mother-to-child transmission
(PMTCT) – again high numbers although universal access is not yet enjoyed everywhere.
Elimination would require a complete cascade of programmatic provision to ensure universal
and appropriately regular HIV testing of all pregnant women to ensure identification
of HIV early in pregnancy, followed by comprehensive roll out of appropriate HIV care,
ART and support. Better still, not only should HIV-negative pregnant women in high-prevalence
areas be tested regularly, but also their households including their partners – this
has been reported to halve HIV acquisition (Fatti, Ngonzo, & Grimwood, 2013) in these
most vulnerable women. The 2010 WHO PMTCT B+ regime, which included sustained ART
for life for pregnant or lactating women once diagnosed, contributes to preventing
MTCT during pregnancy and postnatally and reduced transmission to sexual partners
– thus indirectly protecting fatherhood as well. WHO recommendations relating to treatment
eligibility have been expanded over time, with the most recent, September 2015, guidelines
suggesting starting ART immediately upon HIV diagnosis for all, irrespective of clinical
or immunological disease progression. This new recommendation thus merges PMTCT with
optimal treatment of HIV-infected women. And now there is pre-exposure prophylaxis
which could be a valuable adjunct to safer/barrier sex in further protecting women
and reducing HIV transmission in discordant couples. All these elements can contribute
to provision for safe and healthy families – the bedrock of child development and
positive child environments.
MTCT can occur before, during and after delivery. With the use of ART in the prevention
of MTCT, rates of MTCT have come down substantially and – where PMTCT is available
and effective – are now less than 1% at six weeks of age (reflecting peripartum acquisition
of infection) and <4–5% at 18 months of age (depending on the duration of breastfeeding
under the cover of ART); it is anticipated that with the further expansion of ART
for treatment and prevention, rates at the end of breastfeeding will be below 2% –
already <1% has been achieved in some of the busier clinics in the KwaZulu-Natal midlands
of South Africa. Community support for pregnant women has also shown promise in improving
PMTCT outcomes (Fatti, Shaikh, Eley, & Grimwood, 2016). With PMTCT and ART for life
for the mother, child mortality rates have declined substantially; mortality rates
in uninfected children born to mothers with HIV who are on ART are similar to those
in children born to HIV-uninfected mothers, reflecting the increase in maternal survival
benefit which extend to all her children.
These varying health outcomes highlight the complex multidimensional facets of inequity
– where the interplay of poor social justice, the lack of children’s right and ethics
result in the inequalities in health in most countries which are unnecessary, preventable
and unjust (Singh et al., 2013).
Preventing HIV infection in infants is a primary challenge; yet there is more to the
needs of children than PMTCT or ART for those infected. To thrive, they need to be
born into a family with good parenting, parents who both survive and lead productive
lives to ensure economic and social stability. The importance of the early child years
for optimal development and later health is undoubted, with researchers highlighting
the need to invest in the first 1000 days of life from conception (Engle, Castle,
& Menon, 1996; Richter & Naiker, 2013; Sherr, 2005). HIV in the family has the propensity
of disrupting and dismantling many of the pillars of early child provision, exacerbating
inequity, leading to further inequality and spiralling the household into secondary
poverty where there is no social service safety net or adequate healthcare provision.
Society needs to ensure the first 1000 days are well supported for optimum health
and social outcomes for the child and parents, as reflected in the Sustainable Development
Goals (SDGs). Certainly society could do well to extend this to the first 1000 weeks
of life – bringing newborns safely to adulthood in those 19 years.
ART for HIV-infected adults has considerably improved life expectancy which will directly
affect parenting and the quality of early years care for infants. Life expectancy
for adults in rural South Africa has increased from a nadir of 49.2 years in 2003,
before the introduction of ART for HIV-infected adults to 60.5 years in 2011, five
years after the start of the HIV treatment and care programme in the area (Bor, Herbst,
Newell, & Bärnighausen, 2013). The more extensive the treatment coverage of HIV, the
lower the incidence: if ART coverage increases to over 20%, the rate of new HIV infections
in the same population decreases by 23% and by 38% for over 30% (Tanser, Bärnighausen,
Grapsa, Zaidi, & Newell, 2013); the idea forms the basis for the UN Fast Track goals
of 90% of people HIV-infected knowing their status and 90% of these accessing ART
with 90% of these being virally suppressed, as a stepping stone to reaching 95% for
each of these by 2030 in anticipation of an AIDS-free generation. Yet beyond birth
there is the need to support caregivers to be carers. It is well established that
the quality of early caregiving dramatically effects child development outcomes with
long-reaching effects (Walker, Chang, Vera-Hernández, & Grantham-McGregor, 2011; Walker,
Chang, Wright, Osmond, & Grantham-McGregor, 2015; Walker, Chang, Younger, & Grantham-McGregor,
2010). Caregiver interventions need to be integrated into provision (Chang et al.,
2015).
Before the widespread use of ART, HIV infection was shown to reduce fertility, with
live birth rates in HIV-infected women generally about half of those of HIV-uninfected
women. However, with the expansion of HIV treatment and care programmes and availability
of ART, childbearing decisions now take place in a different context than was previously
the case. With ART, an increase in fertility has been reported in some, but not all,
studies, with levels nearing those of HIV-uninfected women. It is currently unclear
what would drive an increase in fertility after ART initiation, but in qualitative
research, women suggested that their childbearing decisions were not influenced directly
by their HIV treatment, but by personal circumstances, in particular, their relationship
with their partner, but also concerns about their health, their future and the fact
that the chances of having a healthy negative child touching 100%, similar to a woman
HIV-negative.
Although the success in prevention of MTCT has been impressive, with Cuba declared
to have eliminated vertically-acquired HIV infection by WHO (2015) and the world now
starting to talk about eMTCT for elimination of MTCT, HIV treatment and care programmes
face considerable challenges. These challenges range from the need for primary HIV
prevention in women of childbearing age, particularly relevant, considering the continued
high HIV incidence amongst young women in SSA (Harrison, Colvin, Kuo, Swartz, & Lurie,
2015); high rates of unintended pregnancy in HIV-affected communities (Phillips &
Mbizvo, 2016) with, for example, 14% of high school girls in rural KwaZulu-Natal falling
pregnant annually (unpublished data, Shaikh, 2016), the intersecting epidemics of
alcohol use, interpersonal violence and HIV infection in pregnant women (Russell,
Eaton, & Petersen-Williams, 2012), late presentation of pregnant women for antenatal
care (du Plessis et al., 2014), inadequate uptake of the full cascade of PMTCT services
for HIV-infected pregnant women (Woldesenbet, Jackson, Lombard, et al., 2015), a high
incidence of late gestational and postpartum HIV acquisition that significantly contributes
to paediatric HIV (Johnson et al., 2012) and important individual and contextual barriers
to ART initiation, adherence and retention in pregnant women (Hodgson et al., 2014).
Thus, coverage with ART to delay disease progression in pregnant woman and to prevent
MTCT remains suboptimal in many if not most settings. Further, there is a big drop
in follow-up within programmes post-delivery, even though continued ART is essential
to prevent MTCT through breastfeeding and for maternal health. In addition, despite
improvements in recent years, routine early infant diagnosis for HIV-exposed infants
remains suboptimal (Woldesenbet, Jackson, Goga, et al., 2015), which has resulted
in delays in ART initiation for HIV-infected infants who frequently start ART with
severe HIV disease (Porter et al., 2015). These factors reflect the inequity facing
these communities – over 60% unemployment in rural South Africa, coupled with food,
shelter and personal insecurity, lack of basic services such as water and sanitation.
Not addressing these will preclude optimal health outcomes for children.
Much of the treatment debate surrounds child survival questions, but by this point,
the focus on child thriving has moved centre stage. The transition from the MDGs to
the SDGs clearly illustrates this more holistic and comprehensive imperative. This
occurs at the very time that resources are less available, priorities are torn in
many directions and the demands are high. The needs of children have moved from an
equality to an equity call. There are specific groups who are more vulnerable – there
are specific needs that may require disproportionate investment and there are specific
interventions that will have to be prioritised and resourced. Equity moves us beyond
the essential survival aspects of PMTCT, to consider the lives of children and adolescents
in HIV-affected families. For those children and adolescents who are HIV-positive,
research identifies low adherence to ART (Nachega et al., 2009), cognitive limitations
(Sherr, Croome, Bradshaw, & Parra Castaneda, 2014) and stigma (Mburu et al., 2014).
For others who are uninfected, challenges include bereavement, the need to provide
care for unwell family members in situations of extreme poverty (Skovdal, 2010), stigma-by-association
(Boyes, Bowes, Cluver, Ward, & Badcock, 2014) and strong situational drivers of risk
behaviours. One of the greatest equity concerns is that children in HIV-affected families
are themselves at increased likelihood of HIV infection – their vulnerability leading
to intergenerational risk.
HIV presents multiple and severe challenges to equity for children. This special issue
was commissioned to revisit this equity theme. At the International AIDS Society conference
in Durban in 2000, President T. Mbeki missed an important opportunity to link inequity
and HIV. He said at the opening plenary that poverty was the cause of AIDS and not
a virus, what he should have said was poverty increases the susceptibility to infection
and the impact of the infection on the health of the individual as well as their family
and that HIV also exacerbates poverty. The Malthusian approach that characterised
the government at the time saw many preventable infections and deaths.
The UN Fast Track goals form the basis of how the submitted articles for this special
edition are grouped. The first group of papers look at testing and diagnosis of HIV
(the first 90%), the second cluster (second 90%) on linkage to care and treatment
and the third cluster on adherence and viral suppression. The editors have also created
a fourth category that the majority of papers talk to that encompasses the continuum
of care incorporating the psychosocial aspects of HIV.
The chosen papers indicate various challenges for which interventions need to be developed
or improved to ensure all HIV-affected children “survive, develop and reach their
full potential without discrimination” (UNICEF, 2011). It gathers together papers
that explore resilience, geographical areas of high burden and high need and explores
a number of elements of the care cascade for children. Five papers examine the importance
of caregiver issues, four comment on adherence to treatment – vital for efficacious
long-term viral suppression and quality survival, two focus on MTCT, two papers examine
issues of HIV testing and counselling and five look in-depth at those with HIV (parents
n = 2 and children n = 3). The selection is not exhaustive and coverage not comprehensive,
but this issue gives insight into current areas of research, concern, understanding
and achievement from a wide geographical area. The majority of studies are carried
out in SSA, reflecting the epicentre of child HIV burden, but papers from China, Haiti
and Panama were also included to demonstrate and reflect the global challenges. Wei,
Li, Harrison, Zhao, and Zhao (2016) examine the psychological factors that reduce
the effects of HIV stigma and promote resilience in HIV-affected children in China.
Barenbaum and Smith (2016) use the Social Action Theory framework to look into the
elements that contribute to the positive development and resilience of HIV-positive
adolescents – giving insight into why HIV-positive children have a lower than expected
rate of mental health problems in South Africa. Sharer, Cluver, Shields, and Ahearn
(2016) explore the relationship between family-social support and mental health disorders
and elaborates on whether family-social support acts as a source of resilience for
HIV-affected adolescents in South Africa. Chaudhury et al. (2016) note that HIV-affected
families often have higher rates of harmful alcohol use, intimate partner violence
and family conflict in Rwanda. Her paper proposes a family intervention to reduce
these occurrences which are detrimental to the child’s well-being. Barenbaum and Smith
(2016) highlight the importance of trusting caregivers for the well-being of children
suffering parental loss and discuss social support interventions. Goldberg and Short
(2016) explore whether Kenyan mothers in HIV-affected households were willing to foster
homeless children. HIV can disrupt functioning in many ways and the paper by Skovdal
(2016) explores why HIV-affected children have classroom concentration problems and
consequently poorer educational outcomes. Hensels et al. (2016) focus on gender differences
in children attending community-based organisations in Malawi and South Africa, highlighting
that for younger children there are many similarities across the gender divide, but
when there are differences, it is boys who are disadvantaged and overlooked – perhaps
prompting the equity needs of boys to be maintained, although girls have often been
the target of interventions. In a systematic review, Goldberg and Short (2016) summarise
the current literature on children living with HIV-infected adults and offer suggestions
for future research in this area. The effectiveness of ART requires life-long adherence,
and five papers investigate why adherence levels are low in HIV-positive individuals.
Estripeaut et al. (2016) examine in Panama the cultural and psychosocial factors that
influence adolescents’s failure to take their medication from a gender perspective.
Bermudez et al. (2016) argue that the economic and social circumstances of youth living
with HIV in Uganda affect their adherence to antiretroviral therapy. Cluver et al.
(2016) assess social protection provisions, and demonstrate how the provision of cash
plus care is associated with significantly enhanced adherence. Coetzee, Kagee, and
Bland (2016b) comment on the insufficient adherence counselling given to caregivers
of children receiving ART in rural South Africa and highlight the need for improved
training and support provided to counsellors. These studies show the importance of
quality provision, yet Coetzee, Kagee, and Bland (2016a), utilizing video-recording
of adherence counselling, pick up the inadequacies of these encounters which last
for less than 8 min, contain very little – if any – counselling and rely on lay workers
who may not provide adequately for effective adherence in children under five who
are reliant upon “mediated adherence” as their caregivers administer treatment. HIV
counselling and testing is believed to be inadequate for HIV-exposed children; Olaleye
et al. (2016) explore the perspective of the health workers who provide paediatric
HIV counselling and testing. Thurman, Luckett, Taylor, and Carnay (2016) report on
the impact that home visits by community-based care workers have on the likelihood
of a high-risk orphaned child being tested for HIV. Busza et al. (2016) focus on female
sex workers and described workshops to encourage clinical service uptake in Zimbabwe.
Following this, Fiori et al. (2016) write a short report on the strategies that need
to be implemented to optimise paediatric HIV care delivery in Togo, West Africa. Chamla
et al. (2016) comment on caregiver satisfaction with paediatric HIV treatment in Nigeria,
where satisfaction with the availability of services and attitude of health workers
was measured. Lastly, the paper by Kidman and Heymann (2016) focuses on caregivers,
presenting a conceptual framework to help address the needs of HIV-affected caregivers.
Her paper also examines the availability of social policies in 25 highly affected
countries in SSA.
These papers feed into the Coalition on Children affected by HIV/AIDS meeting at Durban
2016, in a concerted effort to keep attention and energy focussed on the broad and
ongoing needs of children. The challenges come from many directions. As gains in treatment
and care are made, the spotlight needs to be on the updating of treatment guidelines,
health policies, improving implementation and the review of these as well as health
care system and community support systems strengthening. Improved linkages between
health services and the community are required. Community-support programmes, in which
psychosocial challenges in households of HIV-affected children are identified and
addressed, have been shown to improve outcomes for children receiving ART and improve
early childhood development outcomes (Fatti, Ngonzo et al., 2013; Fatti, Shaikh, Eley,
& Grimwood, 2013; Grimwood et al., 2012). Human behaviour must be understood and accommodated
so that disclosure, adherence and cascade shortcomings can be prevented. The contexts
and worlds of children matter, and young children are particularly reliant on advocates
to protect their interest, fight for their rights and provide for their needs. Children
are not becomings – they are beings. Yet with their being underserved, mistreated
and overlooked, they are becoming impatient. True progress can only be measured by
the extent to which equity for children has been achieved universally. The UN fast
track targets can be used as proxy measures to monitor equity being achieved as we
head towards the 2020, 90-90-90 goals on the road to the 2030 goals of an AIDS-Free
Generation.