6

PEPFAR’s Care Category

Summary of Key Findings

  • As of September 30, 2006, PEPFAR was supporting care services to nearly 2.5 million people, not including orphans and other vulnerable children. Its 5-year target is care for 10 million people (including orphans and other vulnerable children, see Chapter 7). PEPFAR’s care domains and the services within them are largely consistent with those recommended by the World Health Organization for comprehensive care, with several exceptions—the most notable being antiretroviral therapy, which PEPFAR places in the separate category of treatment.

  • Care services include clinical, social, and spiritual care; prevention for people who are HIV-positive; psychological support; and voluntary counseling and testing—all of which are offered in a variety of settings. Counseling and testing services, however, are not counted toward PEPFAR’s 5-year care target. Given its importance as the point of entry for care, prevention, and treatment, counseling and testing is being scaled up in all of the focus countries.

  • The majority of care is offered in the home, but PEPFAR’s model for the home-care workforce has three elements that both have advantages and present challenges: heavy reliance on World Health Organization–recommended community health workers; the focus of its training resources on existing health professionals; and heavy reliance on unpaid volunteers, who are usually familial caregivers—most often women, young girls, and elderly grandmothers. The variability in the quality and length of the training of community health workers raises concern about their ability to provide needed levels of care, particularly for patient assessments for advanced care or administration of medications. PEPFAR’s training focus does not increase the pool of new health workers, contributing to heavy patient loads of paid skilled nurses. And heavy reliance on unpaid volunteers poses problems for sustainability.

  • The quality of care services and the integration of care with prevention and treatment services are difficult to judge because of the great variability in the skills of service providers and the services offered. Efforts to develop and provide comprehensive services are hampered by nascent infrastructures and a lack of necessary resources and commodities, but continued efforts to improve and provide integrated, community-based, family-centered care services are needed. An issue of particular note is the comprehensiveness of PEPFAR’s efforts to address the nutritional and food security needs of people living with and affected by HIV/AIDS.

  • PEPFAR has encouraged Country Teams to standardize preventive care services for those living with and affected by HIV/AIDS. Preventive care services can play a vital role in keeping people healthier longer, particularly when they are not eligible for antiretroviral therapy.



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PEPFAR Implementation: Progress and Promise 6 PEPFAR’s Care Category Summary of Key Findings As of September 30, 2006, PEPFAR was supporting care services to nearly 2.5 million people, not including orphans and other vulnerable children. Its 5-year target is care for 10 million people (including orphans and other vulnerable children, see Chapter 7). PEPFAR’s care domains and the services within them are largely consistent with those recommended by the World Health Organization for comprehensive care, with several exceptions—the most notable being antiretroviral therapy, which PEPFAR places in the separate category of treatment. Care services include clinical, social, and spiritual care; prevention for people who are HIV-positive; psychological support; and voluntary counseling and testing—all of which are offered in a variety of settings. Counseling and testing services, however, are not counted toward PEPFAR’s 5-year care target. Given its importance as the point of entry for care, prevention, and treatment, counseling and testing is being scaled up in all of the focus countries. The majority of care is offered in the home, but PEPFAR’s model for the home-care workforce has three elements that both have advantages and present challenges: heavy reliance on World Health Organization–recommended community health workers; the focus of its training resources on existing health professionals; and heavy reliance on unpaid volunteers, who are usually familial caregivers—most often women, young girls, and elderly grandmothers. The variability in the quality and length of the training of community health workers raises concern about their ability to provide needed levels of care, particularly for patient assessments for advanced care or administration of medications. PEPFAR’s training focus does not increase the pool of new health workers, contributing to heavy patient loads of paid skilled nurses. And heavy reliance on unpaid volunteers poses problems for sustainability. The quality of care services and the integration of care with prevention and treatment services are difficult to judge because of the great variability in the skills of service providers and the services offered. Efforts to develop and provide comprehensive services are hampered by nascent infrastructures and a lack of necessary resources and commodities, but continued efforts to improve and provide integrated, community-based, family-centered care services are needed. An issue of particular note is the comprehensiveness of PEPFAR’s efforts to address the nutritional and food security needs of people living with and affected by HIV/AIDS. PEPFAR has encouraged Country Teams to standardize preventive care services for those living with and affected by HIV/AIDS. Preventive care services can play a vital role in keeping people healthier longer, particularly when they are not eligible for antiretroviral therapy.

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PEPFAR Implementation: Progress and Promise Recommendation Discussed in This Chapter Recommendation 6-1: The U.S. Global AIDS Coordinator should continue to promote and support a community-based, family-centered model of care in order to enhance and coordinate supportive care services for people living with HIV/AIDS, with special emphasis on orphans, other vulnerable children, and people requiring end-of-life care. This model should include integration as appropriate with prevention and treatment programs and linkages with other public-sector and nongovernmental organization services within and outside of the health sector, such as primary health care, nutrition support, education, social work, and the work of agencies facilitating income generation.

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PEPFAR Implementation: Progress and Promise 6 PEPFAR’s Care Category CATEGORY, TARGET, AND RESULTS The Care Category The President’s Emergency Plan for AIDS Relief (PEPFAR) defines care as “palliative care” (see Box 6-1); care for children orphaned or made vulnerable due to HIV/AIDS (discussed in Chapter 7) is explicitly included in the definition (OGAC, 2004). The Office of the U.S. Global AIDS Coordinator (OGAC) provided further clarification of operational definitions and strategies for care in Final Draft HIV/AIDS Palliative Care Guidance #1: An Overview of Comprehensive HIV/AIDS Care Services in the President’s Emergency Plan for AIDS Relief (OGAC, 2005c), issued in final form in February 2006. In the United States, the term “palliative care” denotes end-of-life or hospice care provided by trained health professionals and volunteers in the last 6 months of a person’s life. The definition adopted by PEPFAR is broader and based on that of the World Health Organization (WHO). According to WHO, palliative care is “an holistic approach to improve the quality of life of patients with incurable disease and their families through the prevention and relief of suffering by means of early identification and careful assessment and treatment of pain and other problems, physical, psychosocial and spiritual” (WHO, 2004c, p. 7). PEPFAR defines palliative care as encompassing five domains: clinical, psychological, spiritual, social, and preventive care for HIV-infected people. The PEPFAR definition

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PEPFAR Implementation: Progress and Promise BOX 6-1 PEPFAR’s Definition of Palliative Care PEPFAR defines palliative care as: … patient and family-centered care [which] optimizes the quality of life of adults and children living with HIV though the active anticipation, prevention, and treatment of pain, symptoms and suffering from the onset of HIV diagnosis through death. It also provides the routine monitoring that is essential to determine the optimal time to initiate ART, but continues during and after the initiation of treatment. [It] includes and goes beyond medical management of infections, neurological, or oncological complications of HIV/AIDS to comprehensively address symptoms and suffering throughout the continuum of HIV disease. Routine, confidential counseling and testing is an essential component of palliative care to identify those who need or will need palliative care, family members who could also be infected and in need of care, and family members and partners not infected and in need of prevention. SOURCE: OGAC, 2006d, p. 3. is consistent with the WHO standard with several exceptions, the most significant of which are in the domain of clinical care. WHO includes both antiretroviral therapy (ART) and services to prevent mother-to-child transmission of HIV in the clinical care domain. By contrast, OGAC includes in that domain only routine follow-up to determine the best timing for initiation of ART, placing ART itself in PEPFAR’s treatment category, and includes services to prevent mother-to-child transmission in the prevention category. In addition, pain management and prevention/management of opportunistic infections are funded under PEPFAR’s care category, but are placed operationally under the treatment category. The Committee was unable to determine whether this creates challenges to ensuring that these services are a consistent part of home-based care and programs. OGAC also supports voluntary counseling and testing activities with funds from the care category, but the Leadership Act places these activities in the prevention category (OGAC, 2004). One last difference is what WHO describes as the domains of “socioeconomic care” and “human rights and legal support.” It appears that PEPFAR combines these activities into one domain that it calls “social care.” Table 6-1 shows a comparison of the WHO and PEPFAR definitions of comprehensive care; the types of providers for the services listed are shown in parentheses if they are identified. PEPFAR divides care services into three budgeting and reporting subcategories: (1) routine care for HIV/AIDS and care for tuberculosis (TB),

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PEPFAR Implementation: Progress and Promise (2) voluntary counseling and testing, and (3) care-related training. These services can be provided in a variety of settings, including individual homes and community facilities, such as day care centers, outpatient clinics, health centers, workplace facilities, hospice centers, and university/hospital-based centers. The Leadership Act mandates that 15 percent of all funds allocated to the focus countries be designated for palliative care services (OGAC, 2004). Funding for the care category (including funds for services to orphans and other vulnerable children) as a percentage of all resources allocated for prevention, treatment, care, and other program support activities has remained steady (see Chapter 3). Target Unlike the prevention and treatment categories, the care category was not assigned a specific target in the Leadership Act. The 5-year target of care for 10 million people, including orphans and other vulnerable children, was identified in the PEPFAR strategy (OGAC, 2004). Note that although millions of people have received counseling and testing services, which are seen as the point of entry for care and treatment services, OGAC is counting these people toward neither the target of 10 million people receiving care nor any other PEPFAR target. Like the treatment target, the care target is a count of people receiving services and does not provide information about the quality or impact of those services. With the data currently available, it is not possible to determine whether the care services PEPFAR is supporting are of sufficient and equal quality, duration, and type; offered by knowledgeable and skilled providers who receive adequate and appropriate supervision at all levels (a question that applies especially to in-home volunteers and community health workers); or meet the needs of those being served. It is also difficult to determine how people served have been counted toward the care target as the definition of a person served has changed over the life of PEPFAR to become more rigorous and to be more consistent with global norms. Results As shown in Table 6-2, the number of people OGAC reported as having received routine care services has steadily increased each year. By fiscal year 2005, the number of people receiving routine care more than doubled. In fiscal year 2006, however, there was a decline in the number of people who received TB treatment as part of their care services, compared to the previous fiscal year. Through September 30, 2006, PEPFAR had cumulatively supported voluntary counseling and testing for nearly 19 million men, women, and children (OGAC, 2007a). Of equal significance for the

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PEPFAR Implementation: Progress and Promise TABLE 6-1 Comparison of WHO and PEPFAR Definitions of Comprehensive Care for Adults and Children Affected by HIV/AIDS Domain WHO PEPFAR Clinical Care (accessible to everyone regardless of age and gender) (Medical and nursing staff) Voluntary counseling and testing Prevention of mother-to-child transmission Preventive therapy (opportunistic infections [OIs] and tuberculosis [TB]) Management of sexually transmitted infections and OIs Palliative or end-of-life care Support systems (laboratories, drug management) Nutritional support Antiretroviral therapy Health education measures Adequate universal precautions in facilities Postexposure prophylaxis (Physicians, clinical officers, nurses, midwives, traditional healers, community health workers, volunteers) Voluntary counseling and testing Preventive therapy (OIs, TB) Management of OIs and pain Time-limited nutritional support for clinically malnourished people living with HIV/AIDS Follow-up for initiation of antiretroviral therapy and support for adherence Behavior change communication End-of-life and bereavement care Psychological Support (patient and family support to assist in disclosure) Initial and follow-up counseling services for emotional and spiritual needs Support groups, post-test clubs Other peer, volunteer, or outreach approaches within communities Mental health counseling Family care and support groups Support for HIV status disclosure Bereavement care Treatment for mood and anxiety disorders Development and implementation of culturally and age-appropriate psychological initiatives Socioeconomic Support (material support, economic security, food security to meet daily living needs) Micro-credit schemes Housing Food support Helping hands in the household Health insurance schemes Schemes that include HIV/AIDS care and treatment Planning and support for orphans and other vulnerable children in households and communities Equivalent activities are in the “social care” domain (WHO’s “human rights and legal support” domain—see below)

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PEPFAR Implementation: Progress and Promise Domain WHO PEPFAR Human Rights and Legal Support (available in health facilities, communities, and in the workplace to promote equal access to care) Stigma and discrimination reduction Succession planning and property protection Participation of people living with HIV/AIDS (PEPFAR calls this domain “social care”) Community-based support groups Efforts to reduce stigma and discrimination Community development and mobilization of people living with HIV/AIDS Legal services (succession planning, legal documents, inheritance rights) Assistance to secure government grants, housing, or health care Linkages to food support and income generation programs Efforts to increase community awareness of prevention, treatment, and care services Other activities designed to strengthen affected households and communities, including income generation activities Spiritual Care (culturally appropriate and sensitive to individual and community religious beliefs and practices) Equivalent activities are in the “psychological support” domain Life reviews and assessments Counseling related to fear, hope, forgiveness, meaning of life Life-completion tasks Prevention for HIV-infected Individuals Not a separate category, but addressed by services and activities in several domains Counseling and testing for sero-discordant couples Case management services Reinforcement messages from providers for encouragement of disclosure, correct and consistent use of condoms, and attendance at support groups SOURCE: OGAC, 2006f; WHO, 2004c.

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PEPFAR Implementation: Progress and Promise TABLE 6-2 PEPFAR Care Results by Fiscal Year, 2004–2006 Category Fiscal Year 2004 Fiscal Year 2005 Fiscal Year 2006 Total people receiving VCT servicesa 1,791,900 4,653,200 6,426,500 Routine care for HIV/AIDS (2004–2005)b 455,800 1,397,200 Not applicable Routine care for HIV/AIDS (2006)b Not applicable Not applicable 2,464,000 TB treatment and care 241,100 369,000 301,600 Total people receiving care 696,900 1,766,200 2,765,600 Training—routine/TB care 36,700 86,000 93,900 Training—VCT 14,100 22,200 33,500 Total people receiving care-related training 50,800 108,200 127,400 Service outlets—VCT 2,100 4,200 6,466 Service outlets—routine/TB care 5,400 6,800 8,019 NOTE: Figures shown do not include services to orphans and vulnerable children. VCT = voluntary counseling and testing in settings not providing services to prevent mother-to-child transmission of HIV. aThe total number of people receiving VCT services are neither counted towards the number of people receiving care nor included in the total number of people receiving care services in this table, but people who were counseled and tested and found positive would presumably be referred to and receive care services. bIn 2004 and 2005, prophylaxis and treatment were excluded from routine care. In 2006, tuberculosis (TB) prophylaxis was included in the routine care indicator, and treatment of TB and HIV remained separate. SOURCE: OGAC, 2005a, 2006b, 2007a, 2007b. inclusion of voluntary counseling and testing in the care domain is that the Leadership Act places these services in the prevention category, although OGAC supports them with funds allocated for care (OGAC, 2004). The number of people receiving care-related training has also increased each year, with a cumulative total of more than 286, 000 people being trained. The service outlets for voluntary counseling and testing more than tripled from 2004 to 2006 and the outlets for routine and TB care have increased by more than 1,000 from year to year. BACKGROUND: MODELS OF CARE PEPFAR’s Network Model PEPFAR’s network model (OGAC, 2004) comprises central medical facilities, district-level hospitals, and local health clinics, supplemented by

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PEPFAR Implementation: Progress and Promise private, often faith-based facilities to rapidly scale up existing palliative care services for adults, orphans, and other vulnerable children (see Chapter 2). In accordance with national health and HIV/AIDS strategies, PEPFAR intends to build long-term sustainability and capacity by strengthening network-wide linkages among central facilities, international and private donors, community-based services, and home-based programs. The aim is to deliver quality services to intended recipients while following uniform protocols for HIV/AIDS treatment and care and for referrals among the programs. The ultimate goal of the network model is to ensure that technical support and products flow from the center to care facilities at the periphery to expand coverage, especially to rural and underserved areas. In the model’s description, well-functioning, adequately staffed facilities with sufficient physical infrastructure and research capabilities at the core are linked with a referral network of smaller regional hospitals and district facilities down to the community level, which features satellite clinics, mobile units, and community-based services. Facilities and staff within the network identify and refer patients needing more complex care to the more advanced central facilities. Information systems would have regular feedback loops linking facilities at all levels of the network, providing solid data to health providers and policy makers for use in decision making. This model is mainly a medical one, with much of the emphasis being placed on free-standing clinical facilities that offer medical or health services, but not necessarily social or psychological services. The lack of attention to the latter services, whether formal or informal (such as support groups), is of concern to the Committee. OGAC has stated that implementation of the model will strengthen and utilize linkages among the levels of support, but has not articulated how this will occur. Not all facilities in a community provide the same levels and types of care (OGAC, 2004, 2005b, 2006b). Moreover, supervision of care providers is essential in all settings, particularly in home-based care, which over time has required an escalating level of skill (Foster et al., 2005). As early as the PEPFAR strategy document, PEPFAR began to articulate the approach of training and using community health workers to deliver essential supplies, including medications, to people in need in their communities (OGAC, 2004). Their training, along with that of nurses, was to include routine care, symptom management, and monitoring for treatment adherence. According to the strategy, home-based care programs have provided support to large numbers of people and because of their cost-effectiveness were to play a significant role in service delivery as part of the program’s community-based approach. Yet the strategy also acknowledges that the capacity of these programs is currently limited beyond provision of the minimum standards of palliative care. PEPFAR’s intent to begin rapid scale-up of care services was founded on the use of existing services and providers. However, the strategy

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PEPFAR Implementation: Progress and Promise acknowledges that many of the health and social service systems in the focus countries need strengthening and in some cases are practically nonexistent. In addition, weak health systems could exacerbate the effects of stigma and discrimination for people accessing care (OGAC, 2004). PEPFAR has worked with many faith-based and community-based organizations that have historically been “first responders” not only to HIV/AIDS, but also to other health and social conditions (GHC, 2005). The chronicity of HIV/AIDS taxes fragile systems of care more than any other condition. However, PEPFAR is partnering with these organizations, other donors, and the government sector to build on and strengthen national strategies, organizations, and programs to provide care and essential supplies to those in need. To this end, PEPFAR has provided technical assistance to governmental and nongovernmental organizations and training to personnel, while also expecting the Country Teams to support programs in their Country Operational Plans that are aligned with the national plans and strategies of the host governments. At the same time, PEPFAR has faced challenges in finding and funding local and central service contractors that can provide comprehensive care services. This challenge is compounded by contractors that specialize in particular services and pursue niche funding for their activities. This situation could lead to the funding of multiple contractors to roll out the essential services, and present challenges to the integration of services within the care category and between care and prevention and treatment services. PEPFAR has also attempted to build or strengthen care capacity by providing technical assistance to organizations and training to personnel for not only the provision of services, but also for advocacy for reform of human resources policy and development and expansion of access to and use of pain-relieving medications (OGAC, 2005a, 2006b). Community-Based, Family-Centered Care According to OGAC’s palliative care guidance, community-based care is “provided in a variety of community settings, including free-standing outpatient clinics, day care centers, school- or university-based clinics, community health centers, workplace clinics, or stand-alone hospices. These delivery sites provide a wide range of interventions, including primary care, management of acute and chronic medical conditions, and supportive care” (OGAC, 2006d, p. 6). OGAC has also stated its expectation that community-based programs supported by PEPFAR establish linkages with inpatient facilities to facilitate referrals, as described in the network model. OGAC provides the example of a linkage model for community-based care consisting of “links with an orphan and other vulnerable children program, a palliative care provider, a food assistance program, a voluntary family

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PEPFAR Implementation: Progress and Promise planning program, and ART programs within the home and or community” to demonstrate how a patient can be referred to various programs to access comprehensive care at the community level (OGAC, 2006d, p. 7). Comprehensive care does not simply denote the scope of services a program attempts to provide to intended recipients, although a wide range of support services is essential for care to be comprehensive. It is also necessary to identify specific types of services a person will need over the course of the illness, the linkages and referrals necessary to meet complex service needs, whether services are readily accessible in communities, and quality services provided by all professional and volunteer providers. Timeliness, affordability, availability, access, and cultural appropriateness are critical elements of comprehensive services (Ro et al., 2003; WHO, 2004a). Family-centered care focuses on priorities defined by the family through its active participation and identification of problems that compromise its functioning and well-being. Family-centered care is based on a core set of values, beliefs, and principles that include compassion, timeliness of services, flexibility (one size does not fit all, especially in the context of providing core services), cultural competence, and individualization. Other characteristics of family-centered care are team planning, development, and support; a focus on outcomes; planning driven by needs; and a community-based setting (FSPC, 2004). OGAC’s guidance documents and the Committee’s observations during its country visits provide evidence that PEPFAR is incorporating the core principles of family-based care into its community-based approach. For example, the program is increasingly focusing on secondary preventive care services; income generation and economic stability for households; services aimed at helping people be as healthy as possible for as long as possible, with the added goal of keeping families intact; and increased flexibility in individual and community service planning, driven by the needs of the diverse communities within and across the focus countries. As described in Chapter 2, interventions at the community level involving the active engagement and participation of the community have the greatest likelihood of success. A community-based, family-centered model of HIV/AIDS care extends from HIV diagnosis to care for orphans and other survivors. It recognizes the importance of the community context and family resources in the care of people living with HIV/AIDS. Community-based, family-centered care conceptualizes the continuum of care needs and creates and supports services to meet these needs at appropriate times. The goal is to support those living with and affected by HIV/AIDS in living as well as possible for as long as possible, which includes delaying the need for treatment through the use of preventive care services, initiating appropriate services when indicated, and maximizing the quality of life for all affected by the disease. Services may also be required at some point to support end-

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PEPFAR Implementation: Progress and Promise care, the sustained use of volunteers for the provision of care is a worthy subject for targeted evaluation. Harding and colleagues (2005) found that the reliance of African palliative care services on volunteers to provide community and home-based care has been largely successful for palliative care, but that community capacity and the resources and clinical supervision necessary to sustain quality care are lacking. They note that it is not yet clear how much trained professional input is needed for supervision of lay workers and patients, what the community’s maximum capacity for care is, and what level of skills can be expected from lay workers providing palliative care. Further exploration of these issues is critical to the sustainability of community and home-based services. Some PEPFAR-supported partners who were operating prior to the program’s initiation described to the Committee retention and assistance strategies for volunteers, which to some degree mirror PEPFAR’s retention strategies for highly skilled health workers. These strategies include providing transportation to places where care services are offered, reimbursing volunteers’ health expenses, providing ART for those in need, and offering psychosocial support. These strategies are not widespread, however, and not all organizations have the resources to adopt them. Some suggest that all volunteers be paid with some form of remuneration, but the effects this might have on the management and sustainability of community and country programs are unknown. Regardless of what strategies are adopted, it would be sensitive of PEPFAR to strike an appropriate balance with the cultural beliefs and customs of familial caregiving for ill and dying family members. Pain Management Issues related to pain management include government policies related to the availability of opioids in many types of care settings, professional practice standards that specify who is legally allowed to administer pain medications, and concerns about the illegal redirection of medications made available for pain management (OGAC, 2006d) As previously mentioned, management of pain symptoms is included in PEPFAR’s care category, but is operationalized in the treatment category (OGAC, 2004). Seminal research conducted by WHO (2004c) and Harding and Higginson (2005) examined palliative care and pain management in sub-Saharan Africa in the hopes of illuminating issues and practices that could reduce “the historical inadequacy of pain and symptom control in HIV/AIDS home based-care, which has been called ‘home-based neglect’” (Harding and Higginson, 2005, p. 1973). Harding reports that there continues to be misperceptions that ART obviates the need for palliative care; whereas better integration of palliative care in HAART programs is needed (Harding

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PEPFAR Implementation: Progress and Promise and Higginson, 2004, 2005). Additional research by Harding and colleagues (2005) found significant limitations in and a pressing need for the expansion of current HIV/AIDS palliative and end-of-life care. According to the authors, among the five key strategies needed, “pain control remains a primary challenge [that must be addressed] and requires development of pain medication regulation, procurement and distribution polices, and education of health professionals, community workers, and affected people in their purpose and use” (Harding et al., 2005, p. 5). Since traditional healers are often the first point at which help is sought by both cancer and HIV patients, it is suggested that alliances be forged between traditional healers and palliative care providers; the authors note that educational programs for traditional healers have been associated with improved support for patients with HIV (Harding and Higginson, 2004, 2005). PEPFAR is supporting initiatives to build alliances between traditional healers and other health professionals, but the extent of these partnerships throughout the focus countries is unknown. OGAC has provided specific guidance on pain management for children. According to this guidance, pain management for children should follow the principles of the WHO analgesic ladder, but special attention should be paid to nonverbal symptoms associated with pain and its intensity, since children often are not able to describe pain adequately to permit appropriate treatment (OGAC, 2006g). During PEPFAR’s third annual meeting in Durban, it was noted that many patients and providers report that pain is undertreated in the majority of patients surveyed, and the African Palliative Care Association, a major south-to-south twinning partner, has reported that opioids are unavailable to the majority of providers—in some cases, even mild analgesics are unavailable for adequate pain management (OGAC, 2006e). The Palliative Care Technical Working Group’s fiscal year 2006 plan identified intentions to “gather and disseminate information on simplified tools to ascertain severity of symptoms and pain related to HIV disease in resource poor settings and encourage support for the development of template curricula for pain/symptom management” (OGAC, 2006g, p. 19). The plan also indicated intentions to participate in a number of national and international symposia to learn more about the latest innovations in palliative care, including the 7th Clinical Team and Conference and Scientific Symposium of the National Hospice and Palliative Care Organization in April 2006 (OGAC, 2006g). Harding and Higginson (2005, p. 1975) note that “palliative care worldwide has been evolving to address integrated management of patients through the course of the disease.” They suggest that funders may wish to consider opportunities to improve patient management.

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PEPFAR Implementation: Progress and Promise Addressing the Needs of Women and Girls PEPFAR has expressed a commitment to increasing gender equity in all of its interventions in partnership with both national governments and the civil sector (OGAC, 2005a, 2006b). Women and girls have a number of needs to be met in any concerted and effective response to HIV/AIDS. Many advocates emphasize the urgency of focusing on inheritance and property rights for women and girls since increased financial independence would not only reduce their vulnerability to HIV exposure, but also improve their ability to serve successfully as head-of-households after the death of their male spouses/partners, fathers, and adult children (ICRW, 2005; UNAIDS and UNICEF, 2004; UNICEF, 2006). Of particular importance given the emphasis of family-centered care is that many women, young girls, and elderly grandmothers may need services while simultaneously serving as primary caregivers for other ill and dying family members. Interventions are necessary to reduce their vulnerability to HIV infection, as well as to enhance their ability to shoulder the long-lasting, caregiving burden. It may be unreasonable to expect women and girls to manage the physical and emotional demands of end-of-life care without skilled assistance. Moreover, women and girls, as well as other caregivers, frequently rely on their community network for assistance, which makes strong, effective, and comprehensive community-based care a necessity. Restoration of fertility for women on ART is a growing phenomenon with some programs reporting that up to 90 percent of the pregnancies among HIV-positive women are unplanned pregnancies and 81 percent of those unplanned pregnancies are among the women receiving ART. It is essential to address linkages among HIV/AIDS treatment and care, reproductive health, and family planning services (OGAC, 2006e). Strategies are needed to support women in voluntary family planning and reproductive health, which requires integration with prevention of mother-to-child transmission of HIV, voluntary counseling and testing in family planning settings, access to ART and other necessary medications, and care in community-and home-based settings. As part of its commitment to addressing the needs of women and girls, PEPFAR has articulated opportunities for developing such linkages. While PEPFAR funds for contraception are restricted to the purchase of condoms, linkages to existing family planning and reproductive health programs are encouraged (OGAC, 2006h). Reproductive health covers a broad range of women’s health issues, including the detection and treatment of sexually transmitted infections and support for the desire of a woman or couple who are HIV-positive or a sero-discordant couple to have children safely (Fleischman, 2006). In addition, integration with treatment programs and training of ART providers to meet the reproductive health needs of their clients may be critical in addressing family planning needs since 61 percent of those receiving ART are women (OGAC, 2005a,

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PEPFAR Implementation: Progress and Promise 2006h). Conversely, if programs are not implemented with sensitivity to these issues, both women and men may drop out of care and treatment. PEPFAR’s 5-year strategy includes a clear commitment to addressing gender issues and reducing the vulnerability of women and girls to HIV/AIDS (OGAC, 2004). However, program results for voluntary counseling and testing is the only category that is currently required to be disaggregated by gender. Much of the gender focus in counseling and testing for diagnostic purposes is in initiatives to prevent mother-to-child transmission. By the end of fiscal year 2006, OGAC reports that cumulatively 70 percent of those receiving counseling and testing services supported by the U.S. government in prevention of mother-to-child and all other settings were women (OGAC, 2007a). Voluntary Counseling and Testing The past 2 years has seen increasing interest in moving toward a model of counseling and testing that makes the HIV test a routine part of medical care. In 2004, both the United Nations Programme on HIV/AIDS (UNAIDS) and WHO recommended that “health care providers routinely offer HIV testing to all patients seen in clinical and community-based health service settings where HIV is prevalent and antiretroviral therapy is available (WHO, 2006, p. 11). Such provider-initiated testing also gives the patient the opportunity to refuse the test or “opt out.” While OGAC has stated that PEPFAR will promote and support routine or opt-out testing in appropriate settings, particularly for prevention of mother-to-child transmission (OGAC, 2006b), human rights advocates have raised concern as to whether people are truly able to provide informed consent and not be coerced to undergo testing. This concern appears to stem from questions about whether patients are ready for disclosure of their status and whether stigma, discrimination, and even violence against women may result from undergoing the test and receiving the results (HIV Insite, 2006). Questions also arise about how and whether expanded programs can provide the right amount of information during counseling sessions when human resources are stretched and whether marginalized populations would become more vulnerable to human rights abuses if testing became routine. Other ethical issues, raised above with respect to children and adolescents, include discerning when people are the appropriate age to give consent, when they can understand the information provided and discussed in the counseling session well enough to give informed consent, and given the potential consequences, whether it is appropriate to disclose results to the person being tested. OGAC has reported several key barriers to counseling and testing, including a lack of routine availability of the services in health care settings, stigma and discrimination, shortages of laboratory personnel, long

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PEPFAR Implementation: Progress and Promise distances of patients from testing sites, inadequate access to providers, and lack of availability of rapid tests (OGAC, 2006b). At PEPFAR’s third annual meeting, several challenges related to scaling up counseling and testing services were identified, including shortages of test kits; lengthy pretest counseling sessions; referrals for care, support, and treatment for difficult-to-reach populations; logistical complications associated with the increased demand for mobile services; and lack of consensus on age of consent for HIV testing and how to communicate HIV test results to children (OGAC, 2006d). OGAC reported that 30–40 million counseling and testing sessions are needed to meet their treatment target of 2 million people. PEFAR efforts to scale-up and integrate counseling and testing services include linking counseling and testing to other HIV services, improving access to these services for the general population, and home-based testing and door-to-door counseling to reach families and sero-discordant couples (OGAC, 2007a). During its country visits, the Committee heard reports of problems similar to those raised at the annual meeting. Receipt of test results, for example, is critical to effecting behavior change and initiating care. Yet long waits for test results were often cited as the reason people did not return for their results; the use of rapid tests reduced the numbers of people who were tested but remained ignorant of their status. Limited availability of test kits makes it difficult to respond to the demand for testing, while many test kits are past their expiration date. In its second annual report to Congress, OGAC described its intent to provide an uninterrupted supply of high-quality rapid test kits through the supply chain management system. OGAC has reported that it is contributing to improved quality of counseling and testing services by supporting improved training and greater numbers of counselors, with an emphasis on including information on prevention during counseling sessions (OGAC, 2006b). The quality and impact of those trained to provide counseling and testing and the functioning of testing sites are difficult to determine, however, since OGAC has provided little information in this regard other than numbers. According to OGAC’s guidance, counseling and testing are to be provided according to national and international standards. However, there are few descriptions of the training providers receive, about their ongoing supervision, or about follow-up for those who have received a positive test result and have been referred to care and treatment programs. Integration of Services Through its disease-specific focus, PEPFAR allows for a concentrated response to all aspects of HIV/AIDS and to an individual’s needs throughout the continuum of the illness. At the same time, the program makes choices about eligibility for services because of its limited resources and the

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PEPFAR Implementation: Progress and Promise magnitude of the needs of those affected by the disease. These unavoidable limitations make it essential that PEPFAR’s activities be integrated with and maximize opportunities for referrals to other programs and agencies, including the focus countries’ larger health systems. PEPFAR refers to such linkages as “wrap-arounds” and believes its funds can be used to leverage other resources to meet the needs of those affected by HIV/AIDS. Wrap-around services benefit not only people living with HIV/AIDS, but also family and household members and others in the community. Some of these programs are funded by the U.S. government and some by other donors. Examples are the President’s Malaria Initiative; the Global Fund to Fight AIDS, Tuberculosis and Malaria; the United Nations Children’s Fund (UNICEF); other bilateral and multilateral family planning programs; and food security programs such as the United Nations World Food Program and Food for Peace (OGAC, 2006d). Wrap-around initiatives address such needs as promotion of gender equity; prevention of opportunistic and parasitic infections (e.g., malaria); strengthening of households’ capacity to generate income; strengthening of non-HIV-specific health programs, such as those focused on family planning, child health and immunization, food security and nutrition; substance abuse treatment; and provision of clean water and improved sanitation in communities (OGAC, 2006d). Wrap-arounds were added as an area of emphasis for fiscal year 2006 in OGAC guidance documents. Beyond providing an opportunity for comprehensive services, integration allows for joint problem solving, reduced workload for staff, savings and better targeting of resources, continued improvement of skills for service providers, improved coordination, and the ability to coordinate in the development of annual plans (Peng, 2006). Integration can also facilitate enhanced monitoring and evaluation to improve program planning and make it possible to gauge the quality of services provided. PEPFAR provides a wide range of services in its prevention, treatment, and care categories, but many of these services have been fragmented by budgetary allocations. This fragmentation, coupled with poor linkages and inconsistent/incomplete referrals internally and to external providers for services not supported by PEPFAR, creates missed opportunities for integration along the continuum of care and raises concern about whether patients who are receiving such fragmented services are being well served. PEPFAR guidance emphasizes comprehensive and integrated services at the community level, but much of the program’s planning is being done by partners at the national rather than the local level. For example, PEPFAR has provided technical assistance at the national level for building sustainable palliative care systems. Through this work, a common set of home-based care services is being identified. However, program planning, implementation, and evaluation have been delayed by a lack of comprehensive programmatic guidance

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PEPFAR Implementation: Progress and Promise for family-based care services. PEPFAR, working with its partners, needs to plan strategically to implement comprehensive services and build capacity at the community level. In the care category, PEPFAR’s program guidance is inconsistent in terms of integration of services, as evidenced by the exclusion of the services of traditional healers from what are identified as key areas of training for the provision of comprehensive care through home-based programs. At the same time, PEPFAR does have training programs targeting the development of partnerships with traditional healers to address issues related to adherence to ART and discussion of the effectiveness of ART with patients (OGAC, 2005d, 2006a). In addition, the Committee believes further work is needed to incorporate in PEPFAR’s training curricula and programmatic guidance cross-cutting issues and services such as nutrition and adherence to ART and other medications. Moreover, integration of palliative and preventive care guidance would have positive benefits in supporting overall wellness before and during ART. Other benefits could include impeding the synergism recently reported between malaria and high rates of transmission of HIV. Given the known concomitant effects of malaria and HIV, intensification of scaling-up efforts of PEPFAR’s secondary preventive care services and improving their linkages to services for comorbid infections is necessary. Doing so could contribute to efforts to keep people healthier longer, regardless of whether they are eligible for ART. Such linkages may be imperiled, however, if funding for these other key health care services lags far behind the enormous increases in funding for HIV/AIDS services from multiple sources. Recommendation 6-1: The U.S. Global AIDS Coordinator should continue to promote and support a community-based, family-centered model of care in order to enhance and coordinate supportive care services for people living with HIV/AIDS, with special emphasis on orphans, vulnerable children, and people requiring end-of-life care. This model should include integration as appropriate with prevention and treatment programs and linkages with other public-sector and nongovernmental organization services within and outside of the health sector, such as primary health care, nutrition support, education, social work, and the work of agencies facilitating income generation. CONCLUSION As discussed at PEPFAR’s third annual meeting in Durban, South Africa (OGAC, 2006e), challenges to PEPFAR’s care services include the limited attention care has received as a result of confusion about what PEPFAR means by palliative care, as well as budgetary constraints; implementation

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PEPFAR Implementation: Progress and Promise issues related to preventive care, such as the cost and replenishment of consumables; the integration of palliative care with other services; concern about the ability of programs to meet the increased demand for services resulting from voluntary counseling and testing; questions about how to measure the quality of services and define who can be counted as receiving care; expansion of care services to primary health centers; and the difficulty of ensuring adequate and appropriate commodities, such as medications for pain and management of opportunistic infections, especially TB (OGAC, 2006e). OGAC’s continued inclusion of global care-related guidance in PEPFAR-supported programs underscores its commitment to harmonization and collaboration with other global stakeholders. As the evidence base grows and communities learn more about how best to deal with the epidemic, these practices need to be scaled up and tailored to the needs of other communities. If international standards indicate that insecticide-treated bed nets are effective and should be provided to members of all households to decrease exposure to opportunistic infections such as malaria, for example, PEPFAR-supported preventive care services need to be linked with wrap-around programs that will support such interventions. If specific pharmaceuticals are recommended to treat opportunistic infections such as TB and malaria, establishing linkages with regional and national program managers with responsibility for supply chain management to ensure their timely availability will be necessary. More widespread and consistent inclusion of international guidance may contribute to improved integration of services within service categories, as well as across the continuum of services. PEPFAR-supported care programs need to support and promote community-based, family-centered care. Although this is part of the program’s approach to care delivery, all program implementers could benefit from improved articulation of these expectations. Consensus guidance that is well articulated will facilitate the development of clear standards for the provision and quality of community-based services for families that will contribute to a sustainable response to the epidemic. The Committee is cognizant that its recommendation to this end could have the unintended consequence of increasing the caregiving burden of women and girls; therefore, careful attention to the need for concomitant interventions to ameliorate this effect is essential. PEPFAR’s success in achieving its 5-year target of providing care to 10 million people, as well as in providing care services thereafter, is contingent upon how it defines what it means to have received care services. A simple numerical count is inadequate because an evaluator or program manager cannot know just what services a person has received beyond “care” or whether the count provides an accurate number of people receiving specific types of services or the number of times a person has been served.

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PEPFAR Implementation: Progress and Promise In addition, the Committee believes OGAC recognizes that PEPFAR faces challenges in measuring the quality of services rendered by providers of varying levels of skills. Issuance of PEPFAR’s preventive care package was a step toward defining quality care by standardizing basic preventive care services, and efforts to train service providers according to national and international standards where they exist contribute to standardization of care, but challenges remain in the way quality of care services is measured. Finally, the Committee believes it is critical for OGAC to improve integration of services both within service categories and across the continuum of illness regardless of budget constraints. Successful integration can facilitate the provision of comprehensive services from the facility to the household and community levels, and ensure that everyone living with and affected by HIV/AIDS will be able to access services that are culturally appropriate, affordable, and timely. REFERENCES Abu-Raddad, L. J., P. Patnaik, and J. Kublin. 2006. Dual infection with HIV and malaria fuels the spread of both diseases in sub-Saharan Africa. Science 314:1603–1606. AVERT. 2006. HIV-related opportunistic infections: Prevention and treatment. http://www.avert.org/aidscare.htm (accessed October 31, 2006). Coleman, C. L., L. S. Eller, K. M. Nokes, E. Bunch, N. Reynolds, I. Corless, P. Dole, J. K. Kemppainen, D. Wantland, K. Kirksey, L. Seficik, P. Nicholas, J. J. Hamilton, Y.-F. Tsai, and W. L. Holzemer. 2006. Prayers as a complimentary health strategy for managing HIV related symptoms among an ethnically diverse sample. Holistic Nursing Practice 20(2):65–72. Corless, I. G., E. H. Bunch, J. K. Kemppainen, W. L. Holzemer, K. M. Nokes, L. S. Eller, C. J. Portillo, E. Butensky, P. K. Nicholas, C. A. Bain, S. Davis, K. M. Kirksey, and F.-Y. Chou. 2002. Self-care for fatigue in HIV disease. Oncology Nursing Forum 29(5):E60–E69). Donahue, J. 2005. Strengthening households and communities: The key to reducing the economic impacts of HIV/AIDS on children and families. In A generation at risk: The global impact of HIV/AIDS on orphans and vulnerable children. Edited by G. Foster, C. Levine, and J. Williamson. New York: Cambridge University Press. Pp. 37–65. Dybul, M. 2006 (July 13). The President’s Emergency Plan for AIDS Relief: Looking back and looking forward. Remarks as prepared to Center for Strategic and International Studies. http://www.pepfar.gov (accessed January 3, 2007). Eller, L. S., I. B. Corless, E. H. Bunch, J. K. Kemppainen, W. L. Holzemer, K. Nokes, C. J. Portillo, and P. Nicholas. 2005. Self-care strategies for depression in persons with HIV disease. Journal of Advanced Nursing 51(12):119–130. Fleischman, J. 2006. Integrating reproductive health and HIV/AIDS programs: Strategic opportunities for PEPFAR. Washington, DC: Center for International and Strategic Studies. Foster, G., C. Levine, and J. Williamson. 2005. A generation at risk: The global impact of HIV/AIDS on orphans and vulnerable children. New York: Cambridge University Press. FSPC (Family Strengthening Policy Center). 2004. Policy brief: Introduction to family strengthening. Washington, DC: National Human Services Assembly.

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PEPFAR Implementation: Progress and Promise Gass, R. N, C. Luo, N. Ngongo, S. Crowley, G. Tene, G. Sherman, and A. Harries. 2006. Scaling up pediatric HIV care and treatment in resource-constrained settings. Presentation at the XVI International AIDS Conference, Toronto, Canada. GHC (Global Health Council). 2005. Faith in action: Examining the role of faith-based organizations in addressing HIV/AIDS. Washington, DC: GHC. Harding, R., and I. Higginson. 2004. Palliative care in sub-Saharan Africa: An appraisal. London: King’s College London, University of London. Harding, R., and I. Higginson. 2005. Palliative care in sub-Saharan Africa. Lancet 365:1971–1977. Harding, R., D. Karus, P. Easterbrook, V. H. Raveis, I. J. Higginson, and K. Marconi. 2005. Does palliative care improve outcomes for patients with HIV/AIDS? A systematic review of the evidence. Sexually Transmitted Infections 81:5. HIV Insite. 2006 (July 27). Routine or opt-out counselling and testing: Findings from the 2006 PEPFAR meeting. http://hivinsite.ucsf.edu/InSite?page=pa-hatip-71/ (accessed October 31, 2006). Holzemer, W. L. 2002. HIV and AIDS: The symptom experience: What cell counts and viral loads won’t tell you? American Journal of Nursing 102(4):48–52. ICRW (International Center for Research on Women). 2005. Towards achieving gender equality and empowering women. Washington, DC: ICRW. JLI (The Joint Learning Initiative on Human Resources for Health and Development). 2004. Human resources for health: Overcoming the crisis. Boston, MA: Harvard University. Kaiser Family Foundation. 2006 (October 27). Daily HIV/AIDS report: Botswana launches infant HIV testing program. http://www.kaisertnetwork.org (accessed October 27, 2006). Kalichman, S. 1995. Understanding AIDS: A guide for mental health professionals. Washington, DC: American Psychological Association. Kemppainen, J. K., L. S. Eller, E. Bunch, M. J. Hamilton, P. Dole, W. Holzemer, K. Kirksey, P. K. Nicholas, I. B. Corless, C. Coleman, K. M. Nokes, N. Reynolds, L. Sefcik, D. Wantland, and Y.-F. Tsai. 2006. Strategies for self-management of HIV-related anxiety. AIDS Care 18(6):597–607. Makoae, L. N., N. M. Seboni, K. Molosiwa, M. Moleko, S. Human, N. A. Sukati, and W. L. Holzemer. 2005. The symptom experience of people living with HIV/AIDS in Southern Africa. Journal of the Association of Nurses in AIDS Care 16(3):22–32. Mermin, J. 2005 (May 26). Community and home-based preventive care and ART. Presentation at the PEPFAR Second Annual Field Meeting, Addis Ababa, Ethiopia. Nicholas, P., J. K. Kemppainen, G. E. Canaval, I. B. Corless, E. F. Sefcik, K. M. Nokes, C. A. Bain, K. Kirksey, L. S. Eller, P. Dole, J. J. Hamilton, C. L. Coleman, W. L. Holzemer, N. Reynolds, C. J. Portillo, E. H. Bunch, D. J. Wantland, J. Voss, R. Phillips, Y.-F. Tsai, M. R. Mendez, T. Lindgren, S. M. Davis, and D. M. Gallagher. 2007. Symptom management and self-care for peripheral neuropathy in HIV/AIDS. AIDS Care 19(2):179–189. OGAC (Office of the U.S. Global AIDS Coordinator). 2004. The President’s Emergency Plan for AIDS Relief: U.S. five-year global HIV/AIDS strategy. Washington, DC: OGAC. OGAC. 2005a. PEPFAR first annual report to Congress. Washington, DC: OGAC. OGAC. 2005b. The President’s Emergency Plan for AIDS Relief: Indicators, reporting requirements, and guidelines for focus countries (revised for FY2006 reporting). Washington, DC: OGAC. OGAC. 2005c. Final draft HIV/AIDS palliative care guidance #1: An overview of comprehensive HIV/AIDS care services in the President’s Emergency Plan for AIDS Relief. Washington, DC: OGAC. OGAC. 2005d. FY2005 Country Operational Plans. Washington, DC: OGAC. OGAC. 2006a. FY2006 Country Operational Plans. Washington, DC: OGAC.

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