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7
Children and Adolescents
Main Messages
PEPFAR has positively affected the lives of children and adolescents living with or affected
by HIV. PEPFAR has contributed to major scale up of services (OVC, pediatric care and
support, pediatric treatment, and PMTCT) across delivery settings (facility-based, home-
based, community-based, family support). With its explicit focus on orphans and vulnerable
children, PEPFAR has elevated attention to and investment in meeting the needs of this
population through programs and services that are informed by evidence. PEPFAR has also
been instrumental in facilitating partner country consideration and adoption of policies, laws,
and guidelines on behalf of children and adolescents, including OVC policies and
frameworks, policies for pediatric testing and treatment, and efforts to strengthen legislation
and enforcement for child protection.
Despite progress, there remain insufficiently met needs for the health and wellbeing of
children and adolescents. Although it is not realistic to expect PEPFAR to meet all the need
for children and adolescents in partner countries, there are particular areas where PEPFAR
could strive to address these needs more fully. In particular, there remain gaps in coverage
for PMTCT relative to PEPFAR’s 85 percent goal; coverage of pediatric HIV care and
treatment remains proportionally much lower than coverage for adults, despite the goal in
the reauthorization legislation to provide care and treatment services in partner countries to
children in proportion to their percentage within the HIV-positive population; and OVC
programs struggle to adequately meet the needs of adolescents in particular. Across
program areas, there is also a need to plan for long term sustainability of services and to
build the capability of partner countries to continue the successes they have realized in
addressing the needs of children and adolescents living with or affected by HIV.
The ability to assess the impact of PEPFAR-supported programs for children and
adolescents is restricted by limitations in the available data. There are data insufficiencies in
three key areas directly related to PEPFAR programs: disaggregation by both sex and age,
with age subgroupings (for example, less than 1 year, 1-5 years, 6-17 years), to better
understand what populations are receiving what services; baseline and longitudinal data to
follow children and families and the effects of the services they receive over time; and data
on effectiveness and outcomes to help identify the most effective PEPFAR OVC programs
and models. In addition, there is a lack of data about the total population of children “in
need,” in part due to a lack of clarity and consistency both across countries and across
programs within countries in how the population eligible for PEPFAR-supported services is
defined (i.e. which children are defined as “vulnerable” or “affected by HIV”).
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Recommendation Presented in this Chapter
Recommendation 7-1: To improve the implementation and assessment of nonclinical
care and support programs for adults1 and children, including programs for orphans and
vulnerable children, the Office of the U.S. Global AIDS Coordinator should shift its
guidance from specifying allowable activities to instead specifying a limited number of
key outcomes. The guidance should permit country programs to select prioritized
outcomes to inform the selection, design, and implementation of their activities. The
guidance should also specify how to measure and monitor the key outcomes.
Further considerations for implementing this recommendation:
For orphans and vulnerable children, the new OVC guidance and the ongoing
developments for program evaluation already represent advances in addressing
some of the challenges identified in this evaluation; this recommendation and
considerations are intended to reinforce and further inform and support progress in
achieving PEPFAR’s goals for children and adolescents.
Outcomes for consideration should be linked to the aims of OVC programs, and
therefore could include, for example, increased rates of staying in school, decreased
excessive labor, reduced rates of exposure to further traumas, increased
immunization completion, and increased coverage of HIV testing and treatment. In
continuing to focus on supporting developmentally-informed programs, consideration
should be given to identifying appropriate core outcomes for different age groups and
for achieving developmental milestones. The program evaluation indicator
development process currently being carried out in PEPFAR already offers a
reasonable opportunity to link measures to core target outcomes for OVC programs.
The core key outcomes should also include quality of services and measures to
reflect the potential sustainability of programs.
To enable a shift to a more outcomes-oriented implementation model, partner
countries will need support to define their prioritized outcomes and their target
population and then conduct baseline assessments so that progress toward
outcomes can be measured.
PEPFAR U.S. Mission Teams should work with partner country stakeholders and
implementers to assess country-specific needs and select a subset of the core key
outcomes to focus on when planning, selecting, and developing evidence-informed
activities and programs for implementation
Prioritization is critical in the context of large need and finite resources. Planning with
partner countries, PEPFAR should improve targeted coverage and quality of
supported services for affected children and adolescents by not only prioritizing
outcomes and activities but also by more explicitly, clearly, and narrowly defining the
eligibility for PEPFAR-supported services. This prioritization should be based on an
assessment of country-specific needs with a process that consistently applies
considerations and criteria across countries and programs. This prioritization should
be done in coordination across program areas that address the needs and
vulnerabilities of children and adolescents. These areas, which may target and serve
a broader eligible population of children and adolescents than is determined for
specific OVC programs, include care and treatment, PMTCT, other prevention
1
The discussion of nonclinical care and support for adults leading to this aspect of this recommendation can be
found in Chapter 6.
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services, and gender programs.
To improve the targeted coverage and sustainability for children and adolescents,
PEPFAR and its implementing partners should continue to enhance services through
existing systems and infrastructure and support national governments to expand
social support services and the workforce to meet the health, education, and
psychosocial needs of affected children and adolescents.
OGAC should provide general guidance for country programs on continuous
program evaluation and quality improvement to measure and monitor achievement of
the key outcomes. This may include, for example, template evaluation plans and
methodological guidance. To allow for comparability across countries and programs,
evaluation plans should include (but not be limited to) the defined indicators or other
measures of the core key outcomes. Evaluations should emphasize the use of in-
country local expertise (e.g., local implementing partners/subpartners and local
academic institutions) to enhance capacity building and contribute to country
ownership. (See also recommendations for PEPFAR’s Knowledge Management in
chapter 11).
PEPFAR should develop a system for active dissemination and sharing of evaluation
outcomes and best practices both within and across countries that is driven as much
by country-identified needs for information as by opportunities for exchange of
information identified by headquarters-level leadership and Technical Working
Groups. (See also recommendations for PEPFAR’s Knowledge Management in
chapter 11).
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7
Children and Adolescents
The congressional charge for this study, as laid out in the Lantos–Hyde Act of 2008, 1
requested an “evaluation of the impact on child health and welfare of interventions authorized
under the Act on behalf of orphans and vulnerable children” and “an evaluation of the impact of
programs and activities authorized in the Act on child mortality.” 2 In addition, the request for an
assessment in other areas, especially prevention, treatment, and care programs and gender-
specific aspects of HIV/AIDS, implicitly includes considerations for children and adolescents as
well as for adult populations.
After a brief background on the effects of the HIV pandemic on children and adolescents
and on the needs of this population, this chapter presents the committee’s assessment, in
response to this congressional charge, of PEPFAR’s efforts aimed at the needs of children and
adolescents 3 living with and affected by HIV/AIDS. This chapter includes the primary
presentation of the committee’s assessment of PEPFAR’s activities that fall under the specific
category of programming for orphans and vulnerable children (OVC), following the program
impact pathway framework of assessing inputs, activities, and, to the extent possible, outcomes
and impact. PEPFAR also supports services for children and adolescents through prevention,
treatment, and care programs, and although findings about these programmatic areas are covered
in more detail in other chapters, the major conclusions that are specific to children and
adolescents are also summarized at the end of this chapter in order to bring together a
comprehensive picture of PEPFAR’s efforts to improve the health and wellbeing of children and
adolescents.
1
Tom Lantos and Henry J. Hyde United States Global Leadership Against HIV/AIDS, Tuberculosis, and Malaria
Reauthorization Act of 2008, P.L. 110-293, 110th Cong., 2nd sess. (July 30, 2008).
2
Ibid. at § 101(c), 22 U.S.C. 7611(c)(2)(B)(vi-vii).
3
The term “children and adolescents” is used throughout this report as a general term without a specific age
definition, recognizing that the ages used to categorize children and adolescents vary by data source and
organization. The age categories vary in particular for terms like adolescents, youth, and young people. For example,
WHO defines adolescents as men and women 10–19 years of age and young people refers to men and women 10–24
years of age (WHO, 1999, 2006c). United Nations defines youth as men and women 15–24 years of age and refers
to young people as men and women 10–24 years of age (WHO, 1999, 2006c). Defined age ranges for children and
adolescents also vary by programmatic area within PEPFAR, which uses ages 0-17 years for OVC programs and 0-
14years for pediatric HIV care and treatment. Throughout this report, the specific age ranges used by PEPFAR or by
the cited data source are indicated whenever feasible.
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7-1
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7-2 EVALUATION OF PEPFAR
To meet its charge, the IOM committee assessed PEPFAR’s investment in programming
for children and adolescents, including its progress in meeting fiscal targets; reviewed
PEPFAR’s guidance and the activities it has supported for these populations; and examined
PEPFAR’s progress toward programmatic targets and goals for children and adolescents,
specifically its efforts to increase the number of HIV-positive children receiving treatment
(discussed in Chapter 6) and to increase the number of orphans and vulnerable children receiving
care and support services. To the extent possible, the committee also reviewed the available
evidence to assess the effects of services provided to children and adolescents, efforts to support
family-centered programs and community-led initiatives, and efforts to support countries to
strengthen country policies and systems for supporting this population. The presentation of the
committee’s assessment in these areas is followed by a discussion of the future directions most
recently articulated by PEPFAR in new guidance. Some discussion of child survival in PEPFAR
partner countries is also included in this chapter, including the limitations on directly evaluating
the effect of PEPFAR on child mortality.
BACKGROUND
The HIV/AIDS pandemic has severely affected the lives of millions of children and
adolescents across the globe, endangering their development, life course, and survival. In 2011,
approximately 3.3 million children younger than 15 years of age were living with HIV/AIDS,
and 13 percent of incident cases of HIV were estimated to be children in this age group. An
additional number of adolescents were among the 31 million living with HIV in the adult age
group (15 years and older) (UNAIDS, 2012a). By affecting parents and other caregivers who are
HIV-positive, the HIV/AIDS pandemic also adversely affects infants, children and adolescents
who are not HIV-positive themselves by harming families and depriving children of parental
care and protection. As of 2011, an estimated 17.3 million children and adolescents aged 0–17
years old had lost at least one parent to the AIDS epidemic4 (Luo, 2012). HIV can also indirectly
harm children and adolescents by weakening communities and social support networks, welfare
systems, and economies. The population of children and adolescents affected by HIV varies
widely by geographic, demographic, social, and cultural factors, and their needs and responses to
these needs vary according to these factors as well as their developmental stage and gender.
The health and psychosocial well-being of children and adolescents affected by
HIV/AIDS are influenced by critical developmental and societal factors. When a parent dies, the
grieving process, the deprivation of emotional and material support, and other life changes that
occur because of this loss can affect child health and well-being (Cluver and Orkin, 2009;
Nyamukapa et al., 2008; Whetten et al., 2011a). Mediators of adverse effects as a result of
parental loss include trauma, relocation, residence in poorer households, and residence with more
distantly related caregivers, which can lead to inadequate access to nutrition, shelter, and health
care, lack of educational support, and other effects. For example, many children and adolescents
with sick and dying parents end up becoming the primary caregivers and financial and emotional
4
In 2001, a consensus was reached among members of the UNAIDS Reference Group on Estimates Modelling and
Projection, and international researchers on the definition of orphans due to HIV/AIDS. An “AIDS orphan” was
defined as “a child who has at least one parent who has died due to AIDS” and a “double (or dual) AIDS orphan” as
“a child whose mother and father have both died, at least one due to AIDS (UNAIDS Reference Group on Estimates
Modelling and Projections, 2002).”
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CHILDREN AND ADOLESCENTS 7-3
supporters of their households (Cluver et al., 2007), essentially losing the opportunity of being a
child. Depending on the economic status of the available caregiver, children often enter into
excessive labor and stop attending school (Whetten et al., 2011b). In addition, in settings where
stigmatization is high, children and adolescents who lose parents due to HIV/AIDS have to cope
with more psychosocial stressors than do non-orphans and children orphaned by other causes
(Cluver and Gardner, 2007; Cluver and Orkin, 2009). Children and adolescents living within
communities that experience a high HIV burden are also at a greater risk of homelessness,
exposure to HIV physical and sexual abuse, and sexual exploitation (UNAIDS, 2002, 2004).
Orphans and abandoned children in these communities, both boys and girls, are at high risk of
experiencing additional traumatic events of this kind (Whetten et al., 2011a).
In addition to younger children, the vulnerabilities of adolescents between the ages of 15
and 24 years have also been recognized by the international community, along with the
opportunities for interventions during this important developmental transition period (UN, 2001;
World Bank, 2006) ; ). Adolescents are vulnerable due to age-specific changes that are physical,
psychological, and social (their relationships and roles, expectations, and economic security)
(Call et al., 2002). These changes underlie the ways in which adolescents understand information
and are influenced, their abilities to make decisions in the present and plan for the future, and
their perceptions of risk and sexual behavior (Dick, 2009).
In 2011, of the incident HIV cases in people aged 15 years and older, an estimated 40
percent were among those aged 15–24 years (UNAIDS, 2012b). About 5 million people aged
15–24 years were living with HIV in 2011, and in sub-Saharan Africa, this age group, and
particularly young women, are more vulnerable and at greater risk of HIV infection (Gouws et
al., 2008; Napierala Mavedzenge et al., 2011; UNAIDS, 2012b). Beyond greater biological
susceptibility to HIV, there are many socio-cultural factors that increase the vulnerability of
young women to sexually transmitted HIV infection. These include deep-rooted gender roles,
uneven power relations, sexual violence (including rape), intergenerational sex, and a lack of
skills and information that would enable them to access services and better protect themselves
(UNAIDS, 2009). Issues related to women and girls as well as gender norms are discussed in
more depth in Chapter 8.
The United Nations Convention on the Rights of the Child, 5 guides the efforts of the
international community to protect the rights of children to survival, healthy development, and
access to health services. The Convention’s guidelines stress the importance of reversing the
HIV epidemic in children and using the MDGs, the UNGASS on HIV/AIDS, and the UNGASS
on Children as platforms through which to mitigate the negative effects of HIV on children’s
health and well-being (UNICEF, 2007). The Committee on the Rights of the Child (CRC)
monitors the progress of countries in achieving standards and goals primarily through country
reports.
Multilateral and bilateral stakeholders who support efforts and policies for OVC affected
by HIV/AIDS have developed the “Framework for the Protection, Care, and Support of Orphans
and Vulnerable Children Living in a World with HIV and AIDS.” This framework includes five
5
The Convention on the Rights of the Child, which the U.S. has not ratified, is the first legally binding international
instrument that addresses the complete range of civil, cultural, economic, political, and social rights of children.
Through the Convention, UNICEF assumes the responsibility of promoting the rights of children by supporting the
Committee on the Rights of the Child (CRC). UNICEF provides governments with technical assistance on
implementation of the Convention and the development of implementing reports, which must be submitted every 5
years. (OHCHR, 2007; United Nations, 1990; United Nations Treaty Collection, 2010).
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7-4 EVALUATION OF PEPFAR
strategies for improving the well-being of children: “(1) Strengthen the capacity of families to
protect and care for orphans and vulnerable children by prolonging the lives of parents and
providing economic, psychosocial and other support; (2) Mobilize and support community-based
responses; (3) Ensure access for orphans and vulnerable children to essential services, including
education, health care, birth registration and others; (4) Ensure that governments protect the most
vulnerable children through improved policy and legislation and by channeling resources to
families and communities; (5) Raise awareness at all levels through advocacy and social
mobilization to create a supportive environment for children and families affected by
HIV/AIDS” (UNICEF, 2004).
Given the range and scope of the adverse effects of HIV/AIDS on children and
adolescents, addressing their needs is vital to the response to the epidemic. Programs and
services for this population, from infancy through adolescence, provide the opportunity to
mitigate these effects and promote positive outcomes with a long-term trajectory for accrual of
benefits from early intervention. Early intervention of this kind lays the groundwork for
supporting healthy and productive lives and promoting HIV-prevention throughout the
lifecourse. As part of its contribution to the HIV response in partner countries, PEPFAR supports
services for children and adolescents affected by HIV in all of its three main programmatic
areas—prevention, care, and treatment. PEPFAR also supports programs specifically for orphans
and vulnerable children and adolescents, in keeping with the Framework described above
(hereinafter referred to as OVC programs or programming 6). The Lantos–Hyde Act of 2008
underscored the needs of children and adolescents as part of the USG commitment to prevent 12
million new HIV infections worldwide and increase the number of individuals with HIV/AIDS
receiving antiretroviral therapy. It also stated that PEPFAR-supported programs need to “provide
care and treatment services to children with HIV in proportion to their percentage within the
HIV-infected population of a given partner country.” 7 Additionally, PEPFAR II performance
targets for the care and support of people living with HIV include the specific target of providing
care and support for 5 million children and adolescents orphaned or made otherwise vulnerable
by HIV/AIDS. 8
The committee’s assessment of prevention, care, and treatment, including for children
and adolescents, were covered in more detail in Chapters 5 and 6. In brief, PEPFAR support has
made a major contribution to meet the need in partner countries for PMTCT services that reduce
the transmission of HIV to infants. PEPFAR has also contributed to increasing pediatric
treatment, but the coverage of pediatric HIV remains proportionally much lower than coverage
for adults, despite the goal in the reauthorization legislation to provide care and treatment
services in partner countries to children in proportion to their percentage within the HIV-infected
population. Treatment of infants and children remains a persistent challenge across the
continuum of care. The main barriers, especially for infants, come at the stages of testing and
diagnosis, linkages to care and treatment, and timely initiation of therapy.
After a brief summary of PEPFAR’s funding over time across all service for children and
adolescents, this chapter provides the primary presentation of the committee’s assessment of
PEPFAR’s activities that fall under the specific category of programming for orphans and
vulnerable children (OVC).
6
For the purpose of brevity, the acronym OVC will be used to describe programs targeting eligible children and
adolescents under PEPFAR’s programs for orphan and vulnerable children.
7
Supra., note 1 at §101(a), 22 U.S.C. 7611(a)(4)(E).
8
Supra., note 1 at §101(a), 22 U.S.C. 7611(a)(4)(C).
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CHILDREN AND ADOLESCENTS 7-5
FUNDING HISTORY FOR PEPFAR SUPPORT FOR CHILDREN AND
ADOLESCENTS
There is no single mechanism to capture all of the financial investment that has supported
services for children and adolescents through PEPFAR. Activities that support children and
adolescents are implemented with funding captured within several budget codes: Pediatric Care
and Support, Pediatric Treatment, and OVC. Figure 7-1 shows the funding over time in these
budget codes in both the dollar amount and as a proportion of all PEPFAR funding. The total
across these budget codes has increased since the beginning of PEPFAR, reaching by FY 2009 a
peak of about $500 million dollars per year and over 12 percent of all PEPFAR funding, then
with a slight decline in 2010 and 2011. The total planned/approved funding that can be
documented from these budget codes as explicit support for services for children and adolescents
includes a total from FY 2005 to FY 2011 of $2.3 billion, including $1.7 billion for OVC
programs as well as at least $160 million for pediatric HIV care and $405 million for pediatric
treatment.
$600 14%
$500 12%
Constant 2010 USD Millions
10%
$400
Pediatric Care & Support
8%
$300 OVC
6% Pediatric Treatment
$200 As % of total PEPFAR funding
4%
$100 2%
$0 0%
FY05 FY06 FY07 FY08 FY09 FY10 FY11
FIGURE 7-1 Planned/approved funding over time for services for children and adolescents.
NOTES: This figure represents funding for all PEPFAR countries as planned/approved through PEPFAR’s budget
codes. The budget codes are the only available source of funding information disaggregated by type of activity, and
are therefore used in this report as the most reasonable and reliable approximation of PEPFAR investment by
programmatic area. Data are presented in constant 2010 USD for comparison over time. See Chapter 4 for a more
detailed discussion of PEPFAR’s budget codes and the available data for tracking PEPFAR funding.
SOURCES: (OGAC, 2005a, 2006d, 2007c, 2008d, 2010b, 2011b, 2011c)
Although these data give a general sense of the funding history and provide an
approximation of PEPFAR’s overall investment in children and adolescents, it is important to
note that it is difficult to compile an entirely accurate accounting over time of the total
investment that has gone to serve this population of beneficiaries. There are several reasons for
this. First, the services captured by these budget codes have changed over time. In particular,
funding for pediatric treatment was not reported in FY2005 and FY 2008 and the separate budget
code for pediatric HIV care was not introduced until FY 2009. Second, the age ranges covered
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7-6 EVALUATION OF PEPFAR
by these codes vary. The programs captured in the OVC budget code extend until the age of 17
years, while pediatric HIV care and treatment budget codes include services for children less
than 15 years of age, and therefore age groups generally considered to be adolescents receiving
services are included within the adult budget code and are not reflected in these data. Finally,
some services for this population supported by PEPFAR are not included in these codes. Some
other services are included in budget codes that are not tracked separately by age, such as other
prevention services targeted to children and adolescents but not explicitly and exclusively to
OVC. Most notably absent from the totals shown in Figure 7-1 in terms of representing
investments in interventions that benefit children is PMTCT, which is a prevention intervention
to reduce HIV infection in infants, yet is not tracked in a pediatric budget code but rather in its
own prevention budget code (see Chapter 5). In FY 2011, $396 million was planned/approved
for PMTCT services, which is more than three-quarters of the total funding for all other
documentable pediatric services.
Legislative Budgetary Allocation Requirement for OVC Funding
The original legislation authorizing PEPFAR mandated that starting in FY 2006 “not less
than 10 percent of the amounts appropriated…for HIV/AIDS assistance for each such fiscal year
shall be expended for assistance for orphans and vulnerable children.” 9 This earmark was
preserved when the Lantos–Hyde Act of 2008 reauthorized PEPFAR.10 PEPFAR’s policy for
implementing this budgetary requirement is provided in the instructions to country programs on
planning and budgeting for OVC programming through Country Operational Plan (COP)
guidance, and compliance with the requirement is monitored by PEPFAR on a country-by-
country basis through the COP review process. As established in the 2006 COP guidance,
countries are instructed that in order to comply with the requirement, OVC resources should
comprise 10 percent of program resources for prevention, care, and treatment. Countries that are
unable to meet the budgetary requirement must provide a justification (OGAC, 2005b). Over
time it was clarified in the COP guidance that the expectation for meeting the 10 percent
budgetary requirement was for countries with generalized epidemics and less applicable for
countries with smaller OVC populations and/or concentrated epidemics (OGAC, 2008c, 2009c).
Ultimately it was explicitly stated that all former focus countries, except Vietnam and Guyana,
are required to comply with the OVC budgetary requirement and a justification for spending less
would not be considered for these countries. For other countries submitting COPs, while OVC
programming is still considered essential, those with smaller OVC populations and/or concentrated
epidemics can submit justifications for spending less than 10 percent (OGAC, 2010a, 2011a).
Tracking PEPFAR’s compliance with the proportional budgetary requirement over time
and across countries is complicated because the guidance on what funding and activities were to
be counted towards the allocation changed over time and was open to some variation by country.
Most significantly, for FY 2006 and FY 2007 countries could select whether to attribute
activities for pediatric HIV to either the OVC budgetary requirements or the treatment budgetary
requirements that were in place at that time (OGAC, 2005b); (OGAC, 2006c). In both years the
COP guidance encouraged countries to prioritize non-treatment OVC activities in a balance with
pediatric treatment activities (OGAC, 2005b, 2006c), and the 2007 guidance specifically
9
United States Leadership against HIV/AIDS, Tuberculosis, and Malaria Act of 2003, P.L.108-25, 108th Cong.,1st
Sess. (May 27, 2003), § 403(b).
10
Supra., note 1 at § 402, 22 U.S.C. 7672(b).
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CHILDREN AND ADOLESCENTS 7-7
encouraged countries to “strive to fund OVC programs at, or as close as possible, the 10% level
prior to including funding for pediatric treatment” to ensure the provision of a comprehensive
OVC program (OGAC, 2006c), p. 5). Since FY2008, the COP guidance has changed to specify
that pediatric treatment could no longer be counted towards the 10 percent budgetary
requirement. Each year the guidance has emphasized that this change was not intended to lessen
the importance of a focus on pediatric treatment as a priority, but rather to establish that the 10
percent requirement should include only OVC programs and that funds for pediatric treatment
should be attributed separately as dedicated funds in the pediatric treatment budget code (OGAC,
2007a, 2008b, 2009b, 2010a, 2011a). Another complication in tracking the proportion of OVC
funds is that the activities funded that contributed to the denominator of total prevention, care,
and treatment resources changed over time when, as of FY 2010, activities in the laboratory
infrastructure budget code were no longer included in the total for the denominator.
Given these complications, in order to reasonably and comparably approximate the
compliance with the legislative earmark across PEPFAR partner countries and over time, the
committee chose to assess the available planned/approved funding data reported through the
OVC budget code, compiling the totals for prevention, care and treatment program resources as
the denominator using the FY2011 definition retrospectively for all years (excluding the
laboratory infrastructure budget code). As shown in Table 7-1, even using the planned/approved
funding across all countries, including those with concentrated epidemics and small OVC
populations, PEPFAR has maintained or exceeded the budgetary requirement since FY 2007,
with total planned/approved funds of $1.7 billion dollars for OVC programs over 7 years.
TABLE 7-1 Tracking the Legislative Budgetary Requirement for OVC Programming (in USD
millions)
FY2005 FY2006 FY2007 FY2008 FY2009 FY2010 FY2011 Total
OVC $74.3 $111.6 $202.9 $305.1 $350.6 $327.9 $336.0 $1,708.4
Total Program
Resources
$946.2 $1,238.9 $2,120.2 $2,962.2 $3,165.9 $3,119.3 $3,269.1 $16,821.8
(prevention, care,
and treatment)
OVC as % of total
8% 9% 10% 10% 11% 11% 10% 10%
program resources
NOTES: This table represents funding for all PEPFAR countries as planned/approved through PEPFAR’s budget
codes. The budget codes are the only available source of funding information disaggregated by type of activity, and
are therefore used in this report as the most reasonable and reliable approximation of PEPFAR investment by
programmatic area. Data are presented in constant 2010 USD for comparison over time. See Chapter 4 for a more
detailed discussion of PEPFAR’s budget codes and the available data for tracking PEPFAR funding.
SOURCES: (OGAC, 2005a, 2006d, 2007c, 2008d, 2010b, 2011b, 2011c)
The original legislation also prescribed that of the 10 percent earmark, “at least 50
percent shall be provided through non-profit, nongovernmental organizations including faith-
based organizations that implement programs at the community level,” 11 and this was maintained
in the reauthorizing legislation. Country Operational Plans and interview data collected by this
committee reflect that PEPFAR’s OVC activities are widely implemented by the kinds of
organizations described in the legislation. However, because there is no central reporting of
funding both by implementing partners and sub-partners and by budget code (see Chapter 4), the
11
Supra., note 9 at §403(b).
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7-24 EVALUATION OF PEPFAR
2012a), p.21) and does not specify a timeline for transitioning children from OVC programs.
Further it recommends that a “young person who turns 18 while receiving OVC assistance
should not be terminated from receiving assistance; rather, from the outset, programs should plan
for appropriate transition strategies and be prepared to cover a buffer period for seamless
transition” (OGAC, 2012a), p.21).
The core areas of intervention recommended in the guidance are re-organized by the
following technical sectors: education, psychosocial care and support, household economic
strengthening, social protection, health and nutrition, child protection, legal protection, and
capacity building. Further, the guidance emphasizes the continuum of the response to address
lifetime needs of OVC populations, and PEPFAR recommends the integration of OVC programs
with HIV prevention, care, and treatment. The new guidance is based on the ecological model for
child development, with a primary strategy of strengthening parents, caregivers, and families,
rather than a child-focused approach, as well as setting OVC programs within coordinated
systems of community- and facility-based services and providers.
In the new guidance PEPFAR also specifies that it does not require that programs provide
a minimum package of services. Many programs understood the prior guidance to require that
individual programs are required to provide a minimum package of services; which OGAC
recognized may have led to NGOs providing services that were not their strengths, leading to
challenges delivering quality services.
The new guidance also emphasizes the need to prioritize interventions. PEPFAR cannot
address all needs, so programs need to identify what activities and interventions are most urgent
and will have the biggest impact. The guidance does not prescribe priorities, but does provide
illustrative guidance on prioritization of interventions relative to different scenarios of the
epidemic. The guidance also provides a compendium of best practices.
In addition, country and community ownership is an important element in the new
guidance, with a push for local community-based organizations and nongovernmental
organizations to take on the role of prime partners, while still recognizing the role of larger
partner organizations in helping implement programs. Other models to support smaller local
partners include umbrella organizations and the use of private firms for financial administration
and oversight.
Finally, the new guidance recommends that 10 percent of the OVC portfolio budget at the
country level is allocated for M&E, in a manner to be determined by the Mission Team. The
guidance emphasizes the need to support both innovation in OVC programming and evaluation
of OVC programs. As described previously, in addition to the new OVC programming guidance,
PEPFAR has also recently spearheaded an effort to develop, field test, and pilot methods for
program evaluation to disseminate and implement in OVC programs.
PEPFAR’S PROGRAMS AND CHILD SURVIVAL
HIV programs, such as those implemented through PEPFAR, have the potential to reduce
under-five mortality (Bourne et al., 2009; Ndirangu et al., 2010), and to contribute to Millennium
Development Goal 4 (to reduce child mortality, and in particular to achieve a 2/3 reduction in the
under-5 mortality rate between 1990 and 2015). The most direct programs that can be expected
to affect child mortality are those for the prevention of maternal to child transmission and those
for the successful identification and treatment of infected infants. In addition to these pathways,
which were summarized previously in this chapter and discussed in more detail in chapters 5 and
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CHILDREN AND ADOLESCENTS 7-25
6, programs implemented through PEPFAR also plausibly contribute to child survival through
the OVC programs described in this chapter when they result in improved access to and quality
of non-HIV health services (such as well-child visits, immunizations, nutrition) and other
nonclinical services. Finally, PEPFAR also conceivably contributes to child survival by averting
orphanhood through reduced adult mortality and maintaining the health of parents through
improved availability and coverage of ART and other care and support services; this positive
effect on their caregivers is linked to the health and wellbeing of children (Mermin et al., 2008;
Stover et al., 2008; UNAIDS, 2008; UNAIDS and WHO, 2009).
Although these are plausible pathways to reducing child mortality at the level of
individual children, there are major limitations to directly assessing the effects of PEPFAR
programs on overall population mortality in children. Cause-specific mortality is not often well-
documented in children, but even the best estimates show that HIV/AIDS is only one of many
contributors to child mortality, and in many countries it is not the leading cause of death in
children. Even in countries where HIV is a leading cause, the rates of deaths due to HIV are
often low enough that it would be unrealistic to expect to see a large discernible effect at the
population level in many countries. Therefore, the committee was not able to draw definitive
conclusions about the direct effects of PEPFAR on child mortality rates.
However, the committee did look descriptively at trends in estimated child mortality due
to all causes and due to AIDS using data modeling AIDS deaths from HIV prevalence and
prevention and treatment coverage (Liu et al., 2012). The committee selected the subset of nine
PEPFAR countries where 15 percent or more of the child deaths were attributed to AIDS in
2000, before the initiation of PEPFAR, and in which it was therefore more likely to be able to
discern an effect on estimated AIDs deaths. Of these countries, five were original focus countries
when PEPFAR was initiated (Botswana; South Africa; Namibia; Zambia; Kenya) and four were
not focus countries but did have some USG investment in HIV programs (Zimbabwe; Lesotho;
Swaziland; Malawi). These four have become COP countries since the PEPFAR reauthorization
in 2008.
The committee examined the trends in estimated child mortality in these nine countries
from 2000 to 2010 using data from the Child Health Epidemiology Reference Group (CHERG),
shown in Figure 7-2 (Liu et al., 2012). In all of these nine countries, the child mortality rates
followed a downward trend in both all-cause and AIDS-specific deaths, with several showing
relatively large declines during the time period after PEPFAR was initiated or scaled up. In most
of these countries, the AIDS deaths and all-cause child deaths tracked downward in similar
paths, suggesting that declines in AIDS death are contributing to the decline in overall child
mortality, although it is not feasible to draw a causal inference and AIDS is not likely to be the
sole contributor to the decline. In some exceptions, there is less consistency between the two. In
Malawi, the all-cause deaths decreased more than the AIDS-specific deaths. In Zambia, an initial
decline in all-cause deaths shifted to rise again more recently, while AIDS deaths continued to
decline. This suggests that changes in overall child mortality may have been driven more by
declines in causes of death other than AIDS, as is the case in most other countries examined in
the CHERG analysis (Liu et al., 2012).
In all of these countries, PEPFAR has supported the activities and interventions described
previously that could reasonably be expected to have contributed to improving child survival
during the time period in which, for most of the countries, both overall child mortality and
AIDS-specific child morality have trended downward. However, it is not feasible to draw
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7-26 EVALUATION OF PEPFAR
conclusions that causally link these factors to the mortality trends described here, and it is not
feasible to determine an attribution to PEPFAR investments in programs and services.
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CHILDREN AND ADOLESCENTS 7-27
Botswana Malawi Swaziland
4000
80000
3000
60000
2000
40000
1000
20000
1000 2000 3000 4000 5000
0
0
Number of deaths among children < 5 years
Number of deaths among children < 5 years
0
Number of deaths among children < 5 years
2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010
2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 Year Year
Year
All causes AIDS All causes AIDS
All causes AIDS
Namibia Zambia
Kenya
80000
150000
4000
60000
3000
100000
40000
2000
20000
50000
1000
0
0
Number of deaths among children < 5 years
Number of deaths among children < 5 years
0
2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010
Number of deaths among children < 5 years
2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010
Year Year
2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010
Year All causes AIDS All causes AIDS
All causes AIDS
South Africa Zimbabwe
Lesotho
8000
80000 100000
6000
60000
4000
40000
2000
10000 20000 30000 40000 50000
Number of deaths among children < 5 years
20000
Number of deaths among children < 5 years
2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010
Year
0
2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010
Number of deaths among children < 5 years
Year
2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 All causes AIDS
Year All causes AIDS
All causes AIDS
FIGURE 7-2 All-cause and AIDS deaths for children under 5 in select high-child-mortality-burden PEPFAR countries.
SOURCE: (Liu et al., 2012). Used with permission.
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7-28 EVALUATION OF PEPFAR
SUMMATION
Conclusion: PEPFAR has positively affected the lives of children and
adolescents living with or affected by HIV. PEPFAR has contributed to major
scale up of services (OVC, pediatric care and support, pediatric treatment, and
PMTCT) across delivery settings (facility-based, home-based, community-based,
family support). With its explicit focus on orphans and vulnerable children,
PEPFAR has elevated attention to and investment in meeting the needs of this
population through programs and services that are informed by evidence.
PEPFAR has also been instrumental in facilitating partner country consideration
and adoption of policies, laws, and guidelines on behalf of children and
adolescents, including OVC policies and frameworks, policies for pediatric
testing and treatment, and efforts to strengthen legislation and enforcement for
child protection.
Conclusion: Despite progress, there remain insufficiently met needs for the
health and wellbeing of children and adolescents. Although it is not realistic to
expect PEPFAR to meet all the need for children and adolescents in partner
countries, there are particular areas where PEPFAR could strive to address these
needs more fully. In particular, there remain gaps in coverage for PMTCT relative
to PEPFAR’s 85 percent goal; coverage of pediatric HIV care and treatment
remains proportionally much lower than coverage for adults, despite the goal in
the reauthorization legislation to provide care and treatment services in partner
countries to children in proportion to their percentage within the HIV-positive
population; and OVC programs struggle to adequately meet the needs of
adolescents in particular. Across program areas, there is also a need to plan for
long term sustainability of services and to build the capability of partner countries
to continue the successes they have realized in addressing the needs of children
and adolescents living with or affected by HIV.
Conclusion: The ability to assess the impact of PEPFAR-supported programs for
children and adolescents is restricted by limitations in the available data. There
are data insufficiencies in three key areas directly related to PEPFAR programs:
disaggregation by both sex and age, with age subgroupings (for example, less than
1 year, 1-5 years, 6-17 years), to better understand what populations are receiving
what services; baseline and longitudinal data to follow children and families and
the effects of the services they receive over time; and data on effectiveness and
outcomes to help identify the most effective PEPFAR OVC programs and models.
In addition, there is a lack of data about the total population of children “in need,”
in part due to a lack of clarity and consistency both across countries and across
programs within countries in how the population eligible for PEPFAR-supported
services is defined (i.e. which children are defined as “vulnerable” or “affected by
HIV”).
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CHILDREN AND ADOLESCENTS 7-29
Recommendation 7-1: To improve the implementation and assessment of
nonclinical care and support programs for adults 16 and children, including
programs for orphans and vulnerable children, the Office of the U.S. Global
AIDS Coordinator should shift its guidance from specifying allowable
activities to instead specifying a limited number of key outcomes. The
guidance should permit country programs to select prioritized outcomes to
inform the selection, design, and implementation of their activities. The
guidance should also specify how to measure and monitor the key outcomes.
Further considerations for implementing this recommendation:
For orphans and vulnerable children, the new OVC guidance and the ongoing
developments for program evaluation already represent advances in addressing
some of the challenges identified in this evaluation; this recommendation and
considerations are intended to reinforce and further inform and support progress
in achieving PEPFAR’s goals for children and adolescents.
Outcomes for consideration should be linked to the aims of OVC programs, and
therefore could include, for example, increased rates of staying in school,
decreased excessive labor, reduced rates of exposure to further traumas, increased
immunization completion, and increased coverage of HIV testing and treatment.
In continuing to focus on supporting developmentally-informed programs,
consideration should be given to identifying appropriate core outcomes for
different age groups and for achieving developmental milestones. The program
evaluation indicators currently being developed already offer a reasonable
opportunity to link measures to core target outcomes for OVC programs.
The core key outcomes should also include quality of services and measures to
reflect the potential sustainability of programs.
To enable a shift to a more outcomes-oriented implementation model, partner
countries will need support to define their prioritized outcomes and their target
population and then conduct baseline assessments so that progress toward
outcomes can be measured.
PEPFAR U.S. Mission Teams should work with partner country stakeholders and
implementers to assess country-specific needs and select a subset of the core key
outcomes to focus on when planning, selecting, and developing evidence-
informed activities and programs for implementation
Prioritization is critical in the context of large need and finite resources. Planning
with partner countries, PEPFAR should improve targeted coverage and quality of
supported services for affected children and adolescents by not only prioritizing
outcomes and activities but also by more explicitly, clearly, and narrowly defining
the eligibility for PEPFAR-supported services. This prioritization should be based
on an assessment of country-specific needs with a process that consistently
applies considerations and criteria across countries and programs. This
prioritization should be done in coordination across program areas that address
the needs and vulnerabilities of children and adolescents. These areas, which may
16
The discussion of nonclinical care and support for adults leading to this aspect of this recommendation can be
found in Chapter 6.
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7-30 EVALUATION OF PEPFAR
target and serve a broader eligible population of children and adolescents than is
determined for specific OVC programs, include care and treatment, PMTCT,
other prevention services, and gender programs.
To improve the targeted coverage and sustainability for children and adolescents,
PEPFAR and its implementing partners should continue to enhance services
through existing systems and infrastructure and support national governments to
expand social support services and the workforce to meet the health, education,
and psychosocial needs of affected children and adolescents.
OGAC should provide general guidance for country programs on continuous
program evaluation and quality improvement to measure and monitor
achievement of the key outcomes. This may include, for example, template
evaluation plans and methodological guidance. To allow for comparability across
countries and programs, evaluation plans should include (but not be limited to)
the defined indicators or other measures of the core key outcomes. Evaluations
should emphasize the use of in-country local expertise (e.g., local implementing
partners/subpartners and local academic institutions) to enhance capacity building
and contribute to country ownership. See also recommendations for PEPFAR’s
Knowledge Management in Chapter 11.
PEPFAR should develop a system for active dissemination and sharing of
evaluation outcomes and best practices both within and across countries that is
driven as much by country-identified needs for information as by opportunities
for exchange of information identified by headquarters-level leadership and
Technical Working Groups. See also recommendations for PEPFAR’s
Knowledge Management in Chapter 11.
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CHILDREN AND ADOLESCENTS 7-31
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