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Chapter 3 -- Critical Intervention in the Focus Countries: Care


The President's Emergency Plan for AIDS Relief: First Annual Report to Congress
Office of the U.S. Global AIDS Coordinator
May 23, 2005
Report
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Chapter 3 header -- President George W. Bush visit with children while touring the TASO Center of The AIDS Support Organization in Entebbe, Uganda, July 11, 2003.

Boxed text -- Care SummaryPresident Bush's Emergency Plan for AIDS Relief (PEPFAR/Emergency Plan) supports a strategy that integrates care for those infected or affected by HIV/AIDS with prevention and treatment, recognizing that worldwide there are 39 million people now living with HIV/AIDS and 14 million children orphaned or made vulnerable by HIV/AIDS. In the Emergency Plan's focus countries, nearly 20 million people are living with HIV/AIDS and at least 8 million children have been orphaned or made vulnerable due to HIV/AIDS. Many of these people are in desperate need of care and support, yet limited resources and capacity exist to mitigate the impact of the HIV/AIDS epidemic on struggling communities and nations.

Beyond the millions who live in daily pain and suffering as a result of HIV/AIDS are millions of orphans left to grow up without the love and support of their parents. Orphans are defined as children under the age of 18 years who have lost either a mother or father, and vulnerable children are those affected by HIV through the illness of a parent or principal caretaker.

Many of these children have experienced the added trauma of caring for their ill parents before they succumbed to the disease. In some countries, like Botswana, orphans and vulnerable children account for 20 percent of all children and more than 75 percent of orphans from all causes. Fully addressing the needs of these children is an enormous challenge.

Family members have traditionally stepped into the breach to care for orphans and people living with HIV/AIDS, but the magnitude of the epidemic has stretched communities to the breaking point. Caring for family, friends, and children infected and affected by HIV/AIDS diverts scarce resources and increases vulnerability as people lose the ability to work and carry out other social responsibilities. The lack of care services fuels stigma and denial - as communities come under increasing strain, rejection and discrimination become more common and individuals who need care are often left to fend for themselves. The fear and hopelessness that result can keep people from acting on vital prevention messages or seeking testing, care, and treatment.

Table 3.1 -- Care: FY04 Orphans and Vulnerable Children ResultsThe cycle of care for those infected with HIV begins with HIV testing and a diagnosis of HIV infection. Therefore, counseling and testing is a key entry point to the full spectrum of life-sustaining care and treatment. Counseling and testing plays a role in prevention as well, reducing stigma and identifying important target groups for prevention messages, including discordant couples (couples in whom one person is HIV-positive and the other HIV-negative). Currently, however, fewer than 10 percent of individuals living in resource-poor settings know their HIV status.

The Emergency Plan thus works in concert with national strategies to:

  • Support basic needs for orphans and vulnerable children
  • Support care for HIV-positive people
  • Support counseling and testing for HIV, because knowledge of one's HIV status is the entry point to care

The Emergency Plan has moved rapidly to support the expansion of care services, with the remarkable achievement of supporting care for 1.7 million people living with HIV/AIDS and orphans and vulnerable children in the Plan's first eight months of implementation. The Emergency Plan is well ahead of schedule to reach its June 2005 target of supporting care for 1.1 million people. Although this reporting period covers just the first eight months of the Emergency Plan, already 17 percent of the five-year care target has been reached.

Care for Orphans and Vulnerable Children

Esther Okafor, a radio reporter in Lagos, Nigeria, interviews Jennifer, a child whose parents died of AIDS, for a project supported by the Emergency Plan that raises public awareness about the needs of the over 1.3 million orphans and vulnerable children in the country.Results: Rapid Scale-Up
The Emergency Plan includes a range of activities aimed at improving the lives of children and families affected by HIV/AIDS. Activities include caregiver training; access to education; economic support; targeted food and nutrition support; legal aid; medical, psychological, and emotional care; and other social and material support.

President Bush's Emergency Plan moved rapidly to expand services for orphans and vulnerable children, committing $36,322,000 of the resources available in the focus countries. With an emphasis on strengthening communities to meet the needs of orphans and vulnerable children affected by HIV/AIDS, supporting community- based responses, helping children and adolescents meet their own needs, and creating a supportive social environment, these resources led to supportive care for 630,200 orphans and vulnerable children in the 15 focus countries, provided primarily through community- and faith-based organizations. The Emergency Plan also supported antiretroviral treatment for at least 4,800 orphans and vulnerable children living with HIV/AIDS, significantly increasing funds for this important group (see chapter 2, "Critical Intervention in the Focus Countries: Treatment"). Of the 630,200 orphans and vulnerable children who received support from the Emergency Plan, 551,500 received services at sites directly supported by the U.S. Government, while the remainder were attributed to Emergency Plan contributions to national, regional, and/or local activities such as training, systems strengthening, and policy and protocol development.

Boxed text -- HOPE for Children in Cote d'IvoirePrograms supported through the Emergency Plan include a day care center for orphans and vulnerable children in Namibia. Located in a heavily populated neighborhood, the center provides meals, before- and after-school activities, and a preschool for small children. It also links with the school system to ensure that children are attending school and that such barriers as lack of a school uniform or school supplies are addressed. This type of approach not only provides a safe and nurturing environment for children but also offers considerable relief and support to their caregiver families. Another example is a program in South Africa, in which the Emergency Plan is funding mobilization and training of volunteers; this effort reached 4,000 orphans and vulnerable children in fiscal year 2004. The program is training volunteers in seven communities and will establish five new resource centers over the next year. The resource centers offer meals, counseling services, assistance with school fees, life skills training (including computer training), and assistance in obtaining government services.

Sustainability: Building Capacity
The Emergency Plan has supported projects to increase the capacity of families and communities to provide care and support to children affected by the HIV/AIDS pandemic. Activities have included supporting training for 22,600 caregivers, promoting the use of time-and laborsaving technologies, supporting income-generating activities, and connecting children and families to essential health and other social services where available. After family, the community is the next safety net for children affected by HIV/AIDS. During fiscal year 2004, the Emergency Plan supported 700 service outlets or programs providing care and support for orphans and vulnerable children.

Key Challenges and Future Directions
Scaling up support to families and communities. The evidence is clear that in the vast majority of cases, the best situation for orphaned children is to remain in a family setting within their community. This is difficult, however, and at times overwhelming. Family members are often caring for several children, with few, if any, additional resources. Caregiver families may also have members who are ill with AIDS themselves. Stigma confronts both the children and the families that take them in. There is also a dearth of specialized expertise, such as professionals trained in child psychology and social work. To address these issues, the Emergency Plan will continue to focus resources at the community level, working through community- and faith-based organizations to identify and support best models and practices to bring to scale the support and assistance needed to care for these children.

Boxed text -- Services Provided to Orphans and Vulnerable Children by President Bushs Emergency PlanQuality of programs for orphans and vulnerable children. Given the wide array of community organizations and approaches to care for orphans and vulnerable children, there is a need to develop and institute quality standards for programs and services. There is a growing body of evidence to help define these standards, establish the parameters of a quality program, and monitor to ensure standards are met. The Emergency Plan will pursue these activities in the upcoming year. Many host-country governments and their partners are working to develop a standard package of services for orphans and vulnerable children along with appropriate program monitoring and evaluation. Key to quality care are an enabling political environment and support for family- and communitybased programs for orphans and vulnerable children. The Emergency Plan is working with governments to develop and disseminate national policies, develop and implement protocols and guidelines down to the local level, and ensure that these protocols and guidelines incorpo incorporate best practices and lessons learned. The President's Emergency Plan has informed communities about policies, rights, and benefits regarding orphans and vulnerable children through information and education campaigns, regional training, and community mobilization activities.

Working with other sectors for a multisectoral approach. The needs of orphans and vulnerable children go far beyond traditional health partners and networks. They require access to food, education, job and skills training, and opportunities. To address these needs, the Emergency Plan is reaching out to new partners to ensure a coordinated holistic approach. For example, programs in Guyana, Kenya, Namibia and Zambia are working closely with the education sector and providing scholarships, uniforms and other basic necessities for children orphaned and made vulnerable by HIV/AIDS. The Emergency Plan will work to strengthen these linkages in the upcoming year.

Leveraging partners and resources. The magnitude of the challenges facing orphans and vulnerable children requires far more resources than those available from the U.S. Government alone. With help from donors and the private sector, countries must also tackle these challenges to ensure that government systems and structures are in place to reach these children. South Africa, for example, is working to strengthen birth registrations and the provision of child support grants to caregiver families. In many countries, children are orphaned by a host of causes other than AIDS. Uganda, Ethiopia, and Rwanda, for example, are all struggling with large numbers of orphans from a variety of causes. While the focus of the Emergency Plan is to reach children affected by AIDS, close cooperation with host governments, other donors, the private sector, and communities themselves can help ensure that the basic needs of all orphans and vulnerable children for food, shelter, education, and play are met.

Care for People Living with HIV/AIDS

Table 3.2 -- Care: FY04 Orphans and Vulnerable Children Capacity Building ResultsFor HIV-positive people, care covers a continuum from diagnosis with HIV infection until death. While the vast 48 majority of HIV-positive people do not meet clinical criteria for antiretroviral treatment (ART), they nonetheless need basic health care, symptom management, social and emotional support, and compassionate end-of-life care. Basic health care and support includes routine monitoring of disease progression and prophylaxis and treatment of opportunistic infections, cancers, and other complications of immune suppression, such as waterborne diseases and tuberculosis. This holistic approach to the full spectrum of care services from the time of a diagnosis of HIV infection until death is considered to be palliative care. Building upon definitions of palliative care developed by the U.S. Department of Health and Human Services and the World Health Organization, President Bush's Emergency Plan supports an interdisciplinary holistic approach and interventions to relieve physical, emotional, and practical suffering.

 

 

 

 

 

 

 

 

 

 

 

Boxed text -- Helping Children by Helping Their Caregivers

 

Table 3.3 -- Care: FY04 Palliative Care Results

Results: Rapid Scale-Up
Boxed text -- Basic Palliative Care Services Provided Through the Emergency PlanA total of $62,589,000 was devoted to care for people living with HIV/AIDS in the Emergency Plan's focus countries in the first eight months of Plan activities. These funds achieved rapid and significant results. During the reporting period, the Emergency Plan supported care for more than 1 million adults and children living with HIV/AIDS, almost achieving the June 2005 overall care goal of 1,153,400 with this category of care alone. Overall, 11 percent of resources available for programs in the 15 focus countries were dedicated to care for HIV-positive people.

Of this amount, $28,473,000 was for clinical care and support (including routine clinical follow-up for people not yet requiring ART and diagnosis and treatment of tuberculosis) and $34,116,000 was used in programs supporting symptomatic relief, psychosocial services, and end-of-life care for people with AIDS. The population receiving care included 455,800 people who received services at U.S. Government-supported sites.

In addition to providing support to sites that deliver HIV/AIDS care services, the Emergency Plan also supports national strategies, filling specific gaps in national training, laboratory systems, and strategic information systems (e.g., monitoring and evaluation, logistics, and distribution systems) essential to the effective roll-out of quality care.

HIV/AIDS and tuberculosis are a deadly combination. HIV/AIDS is fueling a resurgence of TB in resource-limited settings. In many areas of the 15 focus countries, upwards of 50 percent of people living with HIV/AIDS are co-infected with TB, which is a leading cause of death in HIV-positive people. Because of the key and tragic synergy between HIV/AIDS and TB, the Emergency Plan monitors programs Table 3.4 -- Care: FY04 Palliative Care Capacity Building Resultsdedicated to people living with HIV/AIDS-TB co-infection. During the reporting period, the Emergency Plan supported TB care and treatment for 241,100 co-infected people. This included diagnosis of latent TB infection, treatment to prevent the development of active disease, and general TB-related care. Of the 241,100 adults and children who received TB care, 101,700 received it at U.S. Government-supported delivery sites, while the remainder received support through U.S. Government contributions to national, regional, and local programs.

Sustainability: Building Capacity
Effective care for people living with HIV/AIDS requires the support of a network of health providers connected to a fully engaged community with an aggressive outreach to people in their homes. The involvement of community- and faith-based groups, which have led homebased care in many focus countries, is key to success. The Emergency Plan is strengthening the capacity of HIV care systems by building on and widening networks that connect clinic facilities with higher-level providers to home-based care programs. The Emergency Plan is also strengthening referral systems to ensure that families have access to other resources beyond their medical needs. To achieve this, in fiscal year 2004 the Emergency Plan supported training for 36,700 care providers in the focus countries. A total of 5,400 service sites received support for personnel, infrastructure development, logistics, strategic information services, and many other components of delivering quality care services.

Key Challenges and Future Directions
In resource-poor settings, the Emergency Plan helps local health systems retain quality health care personnel, like these nurses in Guyana.Human capacity.
As with prevention and treatment, a key challenge to the delivery of quality palliative care is a lack of well-trained providers. Unfortunately, nurses, the mainstay of care services in the health sector, are in short supply in the focus countries both due to the limited number being trained and "brain drain" from resourcelimited to wealthier settings. The supply of other health care providers is also limited. Volunteers, an integral part of care delivery in resource-limited settings, can help fill these gaps, but many are now being hired away as resources become available, threatening the fabric of traditional care systems. Those engaged in the compassionate work of caring for the sick and dying are often overworked with emotionally and physically draining tasks.

The Emergency Plan is addressing these issues through the expansion of existing networks and the development of new networks linking care services to ART services. On-the-job training, preservice training to provide HIV/AIDS education to health care professionals before they enter the workforce, certificate programs to train existing health care professionals, and other training projects are ramping up. Pilot projects on innovative approaches for volunteer remuneration and incentives show encouraging results. A growing number of programs that use the experience and expertise of people living with HIV/AIDS in providing care are being developed. However, much work remains to fill the gap between the number of people who need care and the number of people able to provide it.

Changing key policies that limit care. In certain circumstances, national policies restrict the ability of health aides, including nurses, to carry out important care activities such as prescribing medications to prevent and treat opportunistic infections or control symptoms and pain. Policies are needed to advance quality home-based care and ensure that quality care is a priority. In particular, the integration of a holistic physical, psychological, and supportive approach to end-of-life care is crucial. There are few hospice programs in resource-limited settings, and end-of-life care has received little attention. In many settings, opioids have not been registered for the relief of suffering. The Emergency Plan aggressively promotes policies that will enhance the care of people living with AIDS. The South African Palliative Care Association, for example, has been engaged to provide regional support for basic care and end-of-life care.

The Emergency Plan has developed a "basic preventive care package" that includes key support and preventive therapies such as medications to prevent opportunistic infections and bed nets to prevent malaria. Pilot projects and national programs are being supported to scale up such support, but more efforts are needed to ensure that those in need receive the components of basic care.

Addressing burdens on women and girls. It is well documented that the burden of care for people living with HIV/AIDS falls heavily on the shoulders of women and girls, both at the clinic and community levels; thus the availability and accessibility of comprehensive quality care at the community level will greatly relieve burdens on women and girls. The Emergency Plan is working to integrate comprehensive care in health networks that reach to the community and even household level. The Plan is also engaging in policy advocacy to increase women's and girls' access to and control over resources. In addition, community outreach projects are underway to spread the burden of care more widely. For example, pilot projects in Haiti, Ethiopia, Namibia, and other countries target and support men as care providers. These strategies will limit the emotional, physical, and financial toll of caring for HIV-positive people and reduce the burdens on women and girls. Chapter 4 of this report discusses gender-related issues in more detail.

Boxed text -- SUCCESS Scales Up Community Care in Zambia

Food and nutrition. Basic nutrition is important in the care of HIV-positive people, including those who are receiving ART. The Emergency Plan works to leverage resources from other U.S. Government sources, such as USAID's Title II program, and from other donors, including the World Food Program. The Emergency Plan also provides limited resources for food and nutritional support for people living with HIV/AIDS. The Emergency Plan will redouble efforts to better leverage resources, looking for a wider spectrum of partnerships, including those with private sector, in the coming months and years. The Office of the U.S. Global AIDS Coordinator (OGAC) has spearheaded the creation of an interagency technical working group on food and nutrition, with participation from the U.S. Department of Agriculture, USAID, and the U.S. Department of Health and Human Services, which is making progress in identifying specific program partnerships that will result in comprehensive coverage for people infected and affected by HIV/AIDS.

Table 3.5 -- Care: FY04 Counseling and Testing Services Results

Through mobile testing and counseling sites, Emergency Plan partners in Tanzania are bringing services to remote areas.Involvement of people living with HIV/AIDS. Largely because of stigma and discrimination, there is limited involvement and leadership of people living with HIV/AIDS in care activities (as well as prevention and treatment activities). However, several focus countries are improving this situation. In Ethiopia and Namibia, for example, the Emergency Plan is supporting organizations of people living with HIV/AIDS in providing care, treatment literacy, and adherence counseling. In addition, the Emergency Plan will scale up its funding for support groups for people living with HIV/AIDS.

Secure and reliable supply chain for drugs and commodities.  As with antiretroviral drugs, a consistent and secure supply chain for commodities and medications is necessary for quality care.  The Emergency Plan has issued a call for applications to develop a secure and reliable supply chain management system (see Key Challenges and Future Directions in chapter 2, "Critical Intervention in the Focus Countries: Treatment").

HIV Counseling and Testing
Table 3.6 -- Care: FY04 Counseling and Testing Capacity Building ResultsEntry into care or treatment for people living with HIV/AIDS begins with a diagnosis of HIV infection. Therefore, counseling and testing is a key entry point to the full spectrum of life-sustaining care and treatment. Counseling and testing plays a role in prevention as well, reducing stigma and identifying important target groups for prevention messages, including discordant couples (couples in whom one person is HIV-positive and the other HIV-negative). Despite the obvious need for counseling and testing, access remains extremely difficult. Barriers to services include distance from facilities, the absence of trained providers and rapid tests, and enormous psychological barriers as a result of stigma and the threat of violence against those thought to be HIV-positive. Even in situations where the majority of patients are likely to be HIV-positive (hospital wards, for example), testing is often not available. Increasing access to and use of testing is a central component of the Emergency Plan's global strategy, and the Plan is making considerable progress in this area.

Results: Rapid Scale-Up
With Emergency Plan support, nearly 1.8 million people in the Plan's focus countries received counseling and testing services. Of these, 1,309,500 received these services at U.S. Government-supported sites. Emergency Plan support for strengthening countries' capacity to provide services (including assistance for national and regional policies, communications, protocols to ensure quality services, laboratory support, and purchase of test kits) enabled another 482,400 people to receive counseling and testing services. Because of the key role of counseling and testing in achieving care, treatment and prevention goals, $43,901,00, or 7.7 percent of resources available to the focus countries in fiscal year 2004, were committed to counseling and testing.

Stigma, discrimination, and cultural barriers often inhibit the participation of women in counseling and testing. Of those receiving counseling and testing at a U.S. Government-supported site, 634,900 (or 52 percent) were female.

Sustainability: Building Capacity
As the nexus for effective care, prevention, and treatment programs, it is essential that counseling and testing services be rapidly expanded to ensure that people living with HIV/AIDS learn their status. Capacity needs include the development of counseling and testing sites, the provision of equipment and commodities, and support for training. The Emergency Plan's results for fiscal year 2004 were impressive -- 14,100 individuals, including counselors and people able to perform HIV tests, received training, and 2,100 counseling and testing sites in the 15 focus countries received important support.

Boxed text -- Supporting Integration of Provider-Initiated HIV Counseling and Testing into Antenatal Care in Botswana

Key Challenges and Future Directions
Increasing the number of people tested.
To reach the care and treatment goals of the Emergency Plan, tens of millions of people will need to receive counseling and testing. Identifying people living with HIV/AIDS is the key step in reaching this goal. While the first-year results are impressive, a massive scale-up in counseling and testing is required. Several activities of the Emergency Plan in fiscal year 2004 laid the groundwork for success in moving forward. The most effective HIV counseling and test- ing programs target testing of people with a higher likelihood of being HIV-positive than the general population. The Emergency Plan is aggressively encouraging provider-initiated voluntary counseling and testing (formerly known as "routine testing") of pregnant women, people with tuberculosis or a sexually transmitted infection, and those entering medical facilities. National leaders are recognizing the importance of this issue. In 2004, President Festus Mogae of Botswana, for example, declared provider-initiated testing a national policy.

Increasing the number of people who obtain their results. Not all people who undergo testing receive their results. In certain settings it can take more than one month to obtain laboratory results, and as many as half the people who consent to a test might not return to receive them. Rapid testing can lead to a significant increase in the number of people who know their HIV status. The Emergency Plan has and will continue to strongly promote and support the use of rapid tests. In fiscal year 2004, Namibia moved to rapid testing with Emergency Plan support.

Table 3.7 -- Care: FY04 Progress Toward 2008 Target of 10 Million Individuals Receiving Care and SupportIncreasing partner testing. Partner testing is important to increase the number of people who know their status and who know about HIV prevention methods. Innovative pilot programs (sometimes dedicated exclusively to couples) include facilitating access to counseling and testing in the evenings and on weekends to encourage men to get tested. A pilot couple counseling project in Rwanda has been highly successful. Another innovative approach is home-based testing. Not only can partners be tested in the home, so can other family members, including children. The results from pilot projects are encouraging; in rural Uganda, uptake of home-based testing has exceeded 90 percent.

Increasing the number of women tested. With more than 634,900 women and girls receiving counseling and testing (52 percent of those for whom gender was reported), the Emergency Plan made great strides in fiscal year 2004, but much work remains. Each of the key challenges and future directions mentioned above relates to the effective care of women, in particular those for increasing provider-initiated testing in pregnant women, programs that encourage partner testing, and programs that help to reduce the stigma and cultural barriers that inhibit women's access to services. In certain countries, the percentage of women and girls being counseled and tested meets or exceeds the percentage of HIV-infected women and girls in the population. The Emergency Plan will continue to strengthen its efforts to ensure full and equal access, free of stigma and discrimination, to counseling and testing and the care and prevention services that follow. The Emergency Plan will expand programs that address complex issues such as disclosure of HIV status, stigma, discrimination, and violence.

Accountability: Reporting on the Components of Care
The Emergency Plan supports national HIV/AIDS treatment strategies, leveraging resources in coordination with host-country multisectoral organizations and other donors to ensure a comprehensive response. Host nations must lead a multisectoral national strategy for HIV/AIDS for an effective and sustainable response. Donors must ensure that interventions are in concert with host government national strategies, responsive to host country needs, and coordinated with both host governments and other partners. Stand-alone service sites managed by individual donors are not desirable or sustainable. In an environment with both "upstream" (system strengthening) and "downstream" (site-specific) activities (see "Defining Support for Antiretroviral Treatment" above) often with multiple partners supporting the same sites to maximize comparative capabilities, attribution is complex. OGAC is conducting audits of its current reporting system to refine methodologies for the future, and in the coming fiscal year will further assess attribution and reporting methodologies in collaboration with other donors.

During this reporting period, results for Emergency Plan care programming were determined by totaling all the programs, services, and activities aimed at optimizing quality of life for orphans and vulnerable children; at caring for patients and their families throughout the continuum of illness; and at diagnosing HIV-infection through counseling and testing.

Activities aimed at improving the lives of children and families directly affected by AIDS-related morbidity and/or mortality are counted as orphans and vulnerable children programs. These may include training caregivers; increasing access to education; economic support; targeted food and nutrition support; legal aid; medical, psychological, and emotional care; and/or other social and material support. Institutional responses are also included.

Given the need to independently account for TB prevention, care, and treatment, palliative care totals are made up of two service categories -- basic health care and support and TB/HIV care and support. Basic health care and support includes all clinic- and home/community-based activities aimed at optimizing quality of life of HIVinfected (diagnosed or presumed) clients and their families by means of symptom diagnosis and relief; psychological and spiritual support; clinical monitoring and management (and/or referral for these) of opportunistic infections, including malaria and other HIV/AIDS-related complications; culturally appropriate end-of-life care; social and material support, such as nutrition support, legal aid, and housing; and training and support for caregivers. TB/HIV care and support activities include examinations, clinical monitoring, treatment, and prevention of tuberculosis in HIV palliative care settings as well as screening and referral for HIV testing and TB-related clinical care. U.S. Government in-country staff derive these counts from program reports and health management information systems.

In the area of HIV testing, results report on numbers of individuals trained, numbers of sites where HIV testing is supported, and numbers of individuals tested, disaggregated by gender. Equipment and commodities, in particular test kits, are provided through the program and are inventoried and tracked through standard U.S. Government reporting and accounting systems by the grantees acquiring the goods.



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