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 included 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 adolescents3 living with

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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).

2Ibid., at img101(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, the World Health Organization (WHO) defines adolescents as men and women 10 to 19 years of age and young people refers to men and women 10 to 24 years of age (WHO, 1999, 2006). The United Nations defines youth as men and women 15 to 24 years of age and refers to young people as men and women 10 to 24 years of age (WHO, 1999, 2006). Defined age ranges for children and adolescents also vary by programmatic area within PEPFAR, which uses ages 0 to 17 years for orphans and



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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 included considerations for children and adolescents as well as for adult populations. After a brief background on the effects of the HIV pandemic on chil- dren and adolescents and on the needs of this population, this chapter pres- ents the committee’s assessment, in response to this congressional charge, of PEPFAR’s efforts aimed at the needs of children and adolescents3 living with 1 Tom Lantos and Henry J. Hyde United States Global Leadership Against HIV/AIDS, Tu- berculosis, 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, the World Health Organization (WHO) defines adolescents as men and women 10 to 19 years of age and young people refers to men and women 10 to 24 years of age (WHO, 1999, 2006). The United Nations defines youth as men and women 15 to 24 years of age and refers to young people as men and women 10 to 24 years of age (WHO, 1999, 2006). Defined age ranges for children and adolescents also vary by programmatic area within PEPFAR, which uses ages 0 to 17 years for orphans and 347

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348 EVALUATION OF PEPFAR and affected by HIV/AIDS. This chapter includes the primary presentation of the committee’s assessment of PEPFAR’s activities that fall under the spe- cific 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, treat- ment, 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 summarized at the end of this chapter in order to bring together a comprehensive picture of PEPFAR’s efforts to improve the health and well-being of children and adolescents. 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 vulner- able 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. This chapter also includes some discussion of child survival in PEPFAR partner countries, including the limitations on directly evaluating the effect of PEPFAR on child mortality. BACKGROUND The HIV pandemic has severely affected the lives of millions of children and adolescents across the globe, endangering their health, well-being, and development. The population of children and adolescents affected by HIV varies by geographic, demographic, social, and cultural factors, and their needs and the responses to these needs vary according to these factors as well as to their developmental stage and gender. Globally, approximately 3.3 million children younger than 15 years of age were living with HIV in 2011, and 330,000 children acquired new HIV infections that year vulnerable children (OVC) programs and 0 to 14 years 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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CHILDREN AND ADOLESCENTS 349 (UNICEF, 2012). By affecting parents and other caregivers who are HIV- positive, the HIV pandemic also adversely affects infants, children, and adolescents who are not HIV-positive themselves by affecting their families and depriving them of parental care and protection. As of 2011 an esti- mated 17.3 million children and adolescents up to 17 years old had lost at least one parent to the HIV pandemic4 (Luo, 2012). HIV can also indirectly harm children and adolescents by weakening communities and social sup- port networks, welfare systems, and economies. The health and psychosocial well-being of children and adolescents affected by HIV are influenced by a range of critical factors. Mediators of adverse effects 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, lack of legal and other forms of protection, and other effects (UNICEF, 2007). When a parent dies, the grieving process, the depriva- tion of emotional and material support, and other life changes that occur because of this loss can affect a child’s health and well-being (Cluver and Orkin, 2009; Nyamukapa et al., 2008; Whetten et al., 2011a). Depending on the economic status of their available caregiver, children often enter into excessive labor and stop attending school (Whetten et al., 2011b). In some cases, children and adolescents with sick and dying parents end up becom- ing the primary caregivers and financial and emotional supporters of their households, essentially losing the opportunity of being children (UNICEF, 2007). In settings where stigmatization is high, children and adolescents who lose parents because of HIV/AIDS are faced with more psychosocial stressors than do non-orphans and children orphaned by other causes (Cluver and Gardner, 2007; Cluver and Orkin, 2009; Cluver et al., 2007). Children and adolescents living within communities that experience a high HIV burden are also at a greater risk of homelessness, of exposure to HIV, and of physical and sexual abuse and exploitation (UNAIDS et al., 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 the vulnerabilities of younger children, the international community has also recognized the vulnerabilities of adolescents between the ages of 15 and 24 years along with the opportunities for interventions during this important developmental transition period (UN, 2001; World 4  In2001, a consensus was reached among members of the Joint United Nations Programme on HIV/AIDS (UNAIDS) Reference Group on Estimates Modelling and Projection and inter- national researchers on the definition of HIV/AIDS orphans. 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, p. W9).

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350 EVALUATION OF PEPFAR Bank, 2006). An estimated 5 million people aged 15 to 24 years were living with HIV in 2009 (UNICEF, 2011). In 2011 an estimated 40 percent of HIV incidence in people aged 15 years and older was among those aged 15 to 24 years (UNAIDS, 2012b). Adolescents are vulnerable because of age-specific physical, psychological, and social changes (e.g., their relationships and roles, expectations, and economic security) (Call et al., 2002). These tran- sitions affect the ways in which adolescents understand information, how they are influenced, their abilities to make decisions in the present and to plan for the future, and their perceptions of risk (FHI, 2010). The majority of the people in this age group living with HIV are in sub-Saharan Africa, where young women in particular are more vulnerable and at greater risk of HIV infection (Gouws et al., 2008; Napierala Mavedzenge et al., 2011; UNICEF, 2011). 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 guides the efforts of the international community to protect the rights of children to survival, healthy development, and access to health services. The conven- tion’s guidelines stress the importance of reversing the HIV epidemic in children and using the Millennium Development Goals, the United Na- tions General Assembly Special Session (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 monitors the progress of countries in achieving standards and goals.5 Multilateral and bilateral stakeholders who support efforts and poli- cies 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 strategies for improving the well-being of children: “(1) Strengthen the capacity of families to protect and care for orphans and vulnerable children by pro- 5  The Convention on the Rights of the Child, which the United States 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, the United Nations Children’s Fund (UNICEF) assumes the responsibility of promoting the rights of children by supporting the Committee on the Rights of the Child. UNICEF provides govern- ments with technical assistance on implementation of the Convention and the development of implementing reports, which must be submitted every 5 years (OHCHR, 2007; UN, 1990; United Nations Treaty Collection, 2010).

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CHILDREN AND ADOLESCENTS 351 longing 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 govern- ments 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 chil- dren 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 life course. 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 (OGAC, 2006a, 2011a,b). PEPFAR also supports pro- grams specifically for orphans and vulnerable children and adolescents, in keeping with the framework described above (hereinafter referred to as OVC programs or programming6) (OGAC, 2006a, 2012). The Lantos- Hyde Act of 2008 underscored the needs of children and adolescents as part of the U.S. government (USG) commitment to prevent 12 million new HIV infections worldwide and to increase the number of individuals with HIV/ AIDS who are receiving antiretroviral therapy. It also stated that PEPFAR- supported programs need to “provide care and treatment services to chil- dren with HIV in proportion to their percentage within the HIV-infected population of a given partner country.”7 Additionally, PEPFAR II perfor- mance 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, includ- ing for children and adolescents, were covered in more detail in Chapters 5 and 6. In brief, PEPFAR support has made a major contribution to meeting the need in partner countries for prevention of mother-to-child transmission 6  For the purpose of brevity, the acronym OVC will be used to describe programs or pro- gramming 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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352 EVALUATION OF PEPFAR (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 services 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 OVC. FUNDING HISTORY FOR PEPFAR SUPPORT FOR CHILDREN AND ADOLESCENTS There is no single reporting mechanism that captures 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 Sup- port, Pediatric Treatment, and OVC (OGAC, 2010a). 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 fiscal year (FY) 2009 a peak of about $500 million dollars per year and more than 12 percent of all PEPFAR funding, then declining slightly 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. 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 FY 2005 and FY 2008 (OGAC, 2005a, 2008c), and the separate budget code for pe- diatric HIV care was not introduced until FY 2009 (OGAC, 2008a, 2010b). Second, the age ranges covered by the services documented in these budget codes vary. The programs captured as OVC programs extend through the

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CHILDREN AND ADOLESCENTS 353 $600 14% 12% Constant 2010 USD Millions $500 10% Pediatric Care and $400 Support 8% $300 OVC 6% Pediatric Treatment $200 4% As % of total $100 2% PEPFAR funding $0 0% 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, 2006f, 2007c, 2008c, 2010b, 2011c,d. age of 17 years, while pediatric HIV clinical care and treatment services encompass children less than 15 years of age (OGAC, 2009c,d). In addition, individuals receiving services who are older than the upper limit of these age ranges yet might still be considered adolescents are included within adult budget codes and are not reflected in these data. Finally, some PEPFAR- supported services for this population are not included in these codes but instead are in budget codes that are not tracked separately by age, such as prevention services for youth when not explicitly a part of OVC programs (OGAC, 2011b). 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 (OGAC, 2010a). 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 (OGAC, 2005a, 2006f, 2007c, 2008c, 2010b, 2011c,d). See Chapter 5 for a discus- sion of PEPFAR’s support for PMTCT.

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354 EVALUATION OF PEPFAR 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 assis- tance 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 re- quirement, 10 percent of program resources for prevention, care, and treat- ment should go to OVC programs. 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 that it was less applicable for countries with smaller OVC populations or concentrated epidemics (OGAC, 2008a, 2009b). Ultimately it was explicitly stated that all former focus countries, except Vietnam and Guyana, are required to comply with the OVC budgetary requirement and that 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 or concen- trated 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 toward the allocation changed over time and varied somewhat by country. One major variation is that for FY 2006 and FY 2007 countries could choose to at- tribute activities for pediatric HIV to either the OVC budgetary require- ments or the treatment budgetary requirements that were in place at that time (OGAC, 2005b, 2006e). In both years the COP guidance encouraged countries to prioritize non-treatment OVC activities in a balance with pe- diatric treatment activities (OGAC, 2005b, 2006e), and the 2007 guidance specifically encouraged countries to “strive to fund OVC programs at, or as close as possible, the 10% level prior to including funding for pediat- ric treatment” to ensure the provision of a comprehensive OVC program 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) and §403(2), 22 U.S.C. 7673(b).

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CHILDREN AND ADOLESCENTS 355 (OGAC, 2006e, p. 5). Since FY 2008 the COP guidance has changed to specify that pediatric treatment could no longer be counted toward the 10 percent OVC budgetary requirement. Each year the guidance has em- phasized 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, 2008a, 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, with activities in the laboratory infrastructure budget code no longer included within treatment beginning in FY 2010 and therefore no longer included as part of the total denominator (OGAC, 2008a, 2009b). 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 FY 2011 definition retrospectively for all years (therefore 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 those 7 years. The original legislation also prescribed that “at least 50 percent” of the 10 percent earmark “shall be provided through non-profit, nongovern- mental organizations including faith-based organizations that implement programs at the community level,”11 and this requirement was retained in the reauthorizing legislation.12 COPs and interview data collected by this committee indicate 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 committee was not able to access a comprehensive PEPFAR-wide documentation of funding to determine whether the 50 percent mandate has been met. In summary, although there are complications in definitively and com- prehensively tracking PEPFAR’s total investment over time in children and adolescents, the available data on planned/approved funding show that 11  Supra, note 9 at §403(b). 12  Supra, note 1 at §403(2), 22 U.S.C. 7673(b).

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356 TABLE 7-1 Tracking the Legislative Budgetary Requirement for OVC Programming (in USD Millions) FY 2005 FY 2006 FY 2007 FY 2008 FY 2009 FY 2010 FY 2011 Total OVC $74.3 $111.6 $202.9 $305.1 $350.6 $327.9 $336.0 $1,708.4 Total Program $946.2 $1,238.9 $2,120.2 $2,962.2 $3,165.9 $3,119.3 $3,269.1 $16,821.8 Resources (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. OVC = orphans and vulnerable children. SOURCES: OGAC, 2005a, 2006f, 2007c, 2008b, 2010b, 2011c,d.

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CHILDREN AND ADOLESCENTS 357 PEPFAR has complied with its policy for implementing the legislative bud- getary requirement by spending at least 10 percent of program resources for prevention, care, and treatment on OVC programs. The guidance for complying with this requirement evolved over time to become more clearly focused on support for OVC programs, with separate tracking of invest- ments in pediatric HIV treatment and care. The total planned/approved funding that can be documented as explicit support for services for children and adolescents includes a total from FY 2005 to FY 2011 of $1.7 bil- lion for OVC programs as well as at least $160 million for pediatric HIV care, $405 million for pediatric treatment, and $1.43 billion for PMTCT (OGAC, 2005a, 2006f, 2007c, 2008a, 2010b, 2011c,d). PEPFAR’S PROGRAMS AND SERVICES FOR ORPHANS AND VULNERABLE CHILDREN OVC Program Guidance and Supported Activities PEPFAR provides guidance for programs aimed at meeting the needs of children and adolescents living with and affected by HIV through pro- gramming guidance documents, “Technical Considerations” provided by headquarters-level technical working groups, and the COP guidance, which is released annually at the beginning of the country planning process. The primary relevant programming guidance for OVC programs is Orphans and Other Vulnerable Children Programming Guidance for United States Government In-Country Staff and Implementing Partners (OGAC, 2006a). PEPFAR updated its guidance on OVC programming in July 2012; how- ever, because the program operated under the earlier guidance during the timeframe of this evaluation, the committee’s assessment is made primarily in the context of the prior guidance, which is reflected in this section. The recently updated guidance is discussed in more detail in the section below on the future directions of the program. Guidance related to services for children and adolescents other than specific OVC programming are dis- cussed in Chapter 5 on prevention and Chapter 6 on care and treatment. The 2006 guidance document described those who were potentially eligible for PEPFAR-supported OVC services as children aged 0 to 17 years who are “either orphaned or made more vulnerable because of HIV/AIDS.” An orphan was defined as a child who “has lost one or both parents to HIV/AIDS” (OGAC, 2006b, p. 2). Children were described as being more vulnerable “because of any or all of the following factors that result from HIV/AIDS: is HIV-positive; lives without adequate adult support (e.g., in a household with chronically ill parents, a household that has experienced a recent death from chronic illness, a household headed by a grandparent, and/or a household headed by a child); lives outside of family care (e.g., in

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380 EVALUATION OF PEPFAR Botswana 1000 2000 3000 4000 5000 Number of deaths among children < 5 years 0 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 Year All causes AIDS Kenya 150000 Number of deaths among children < 5 years 0 50000 100000 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 Year All causes AIDS Lesotho 8000 Number of deaths among children < 5 years 0 2000 4000 6000 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 Year All causes AIDS FIGURE 7-2 All-cause and AIDS deaths for children under 5 years, in select high-child- mortality-burden PEPFAR countries. SOURCE: Liu et al., 2012. Used with permission.

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CHILDREN AND ADOLESCENTS 381 Malawi 80000 Number of deaths among children < 5 years 0 20000 40000 60000 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 Year All causes AIDS Namibia Number of deaths among children < 5 years 0 1000 2000 3000 4000 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 Year All causes AIDS South Africa 80000 100000 Number of deaths among children < 5 years 20000 40000 60000 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 Year All causes AIDS FIGURE 7-2 (Continued) All-cause and AIDS deaths for children under 5 years, in select high-child-mortality-burden PEPFAR countries.

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382 EVALUATION OF PEPFAR Swaziland 4000 Number of deaths among children < 5 years 0 1000 2000 3000 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 Year All causes AIDS Zambia 80000 Number of deaths among children < 5 years 0 20000 40000 60000 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 Year All causes AIDS Zimbabwe 10000 20000 30000 40000 50000 Number of deaths among children < 5 years 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 Year All causes AIDS FIGURE 7-2 (Continued) All-cause and AIDS deaths for children under 5 years, in select high-child-mortality-burden PEPFAR countries.

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CHILDREN AND ADOLESCENTS 383 there is less consistency between the two. In Malawi, for example, the all- cause deaths decreased more than the AIDS-specific deaths. In Zambia, after an initial decline in both AIDS deaths and all-cause deaths, the number of all-cause deaths has recently risen again, while AIDS deaths continued to decline. This suggests that the 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 in- terventions 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 conclusions about causality for the mortality trends described here nor to determine the extent to which these trends can be attributed directly to PEPFAR investments in programs and services. SUMMATION Conclusion: PEPFAR has positively affected the lives of children and adolescents living with or affected by HIV. PEPFAR has con- tributed to major scale-up of services (OVC, pediatric care and support, pediatric treatment, and PMTCT) across delivery settings (facility-based, home-based, community-based, and family sup- port). 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 fa- cilitating partner country consideration and adoption of policies, laws, and guidelines on behalf of children and adolescents, includ- ing 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 relating to the health and well-being of children and adolescents. Although it is not realistic to expect PEPFAR to meet all the needs for children and adolescents in partner countries, there are particu- lar areas where PEPFAR could strive to address these needs more fully. In particular, there remain gaps in coverage for PMTCT rela- tive to PEPFAR’s 85 percent goal; the coverage of pediatric HIV care and treatment remains proportionally much lower than the coverage for adults, despite the goal in the reauthorization legisla-

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384 EVALUATION OF PEPFAR tion 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 children, and adolescents in particular. Across program areas, there is also a need to plan for the 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 both by sex and by age subgroups (e.g., less than 1 year, 1 to 5 years, and 6 to 17 years) to better understand which populations are receiving which 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 that can be used 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 about how the population eligible for PEPFAR-supported services is de- fined (i.e., which children are defined as “vulnerable” or “affected by HIV”). Recommendation 7-1: To improve the implementation and assess- ment of nonclinical care and support programs for adults17 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 guid- ance should also specify how to measure and monitor the key outcomes. 17  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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CHILDREN AND ADOLESCENTS 385 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 iden- tified in this evaluation; this recommendation and the further 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, in- creased rates of staying in school, decreased excessive labor, reduced rates of exposure to further traumas, increased im- munization completion, and increased coverage of HIV testing and treatment. With a continued focus on supporting develop- mentally 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 out- comes for OVC programs. • The core key outcomes should also include quality of ser- vices and measures to reflect the potential sustainability of programs. • A shift to a more outcomes-oriented implementation model will require that partner countries receive support to define their prioritized outcomes and their target population and then to 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 to 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 presence of great need and finite resources. When planning with partner countries, PEPFAR should improve targeted coverage and the quality of supported services for affected children and adolescents not only by pri- oritizing outcomes and activities but also by more explicitly, clearly, and narrowly defining the eligibility for PEPFAR-

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386 EVALUATION OF PEPFAR supported services. This prioritization should be based on an assessment of country-specific needs with a process that consis- tently 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 services, and gender programs. • To improve the targeted coverage and sustainability for chil- dren and adolescents, PEPFAR and its implementing partners should continue to enhance services through existing systems and infrastructure and to support national governments in ex- panding 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 in order to measure and monitor the achievement of key out- comes. This may include, for example, template evaluation plans and methodological guidance. To allow for comparabil- ity 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 em- phasize the use of in-country local expertise (e.g., local imple- menting partners and sub-partners as well as 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 the active dissemina- tion 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 recommen- dations for PEPFAR’s knowledge management in Chapter 11.)

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