VI. Critical Interventions in the Focus Countries: Care
HIV/AIDS and associated opportunistic infections cause severe pain, debilitating symptoms and death. Oral and esophageal infections can make eating and swallowing painful or impossible. Uncontrolled diarrhea can cause weakness to the point of total disability, and many of the conditions associated with HIV/AIDS cause severe pain. Pneumonia and other opportunistic infections can, if left untreated, kill. If basic HIV/AIDS care, supportive care, and compassionate end-of-life care for people living with AIDS are not provided, the burden of suffering, morbidity, and early death will continue on an immense scale. Added to the millions who live in daily pain and suffering as a result of HIV/AIDS are the millions of orphans – over 13 million children under the age of 15 – left to grow up without the love and support of their parents. Without widespread access to basic needs such as food and shelter and essential services such as education and health care, this population of children is acutely vulnerable to a host of dangers, including HIV/AIDS, and can themselves become a high-risk population fueling the pandemic. Basic medical care, including treatment of opportunistic infections, symptom management, and end-of-life care and support, is currently out of reach for many White House Photo Office millions of people infected and affected by HIV/AIDS, including orphans and other vulnerable children. Little end-of-life care is available to aggressively address symptoms, pain, and suffering. Basic care and social support needs are currently being addressed, in large part, by family members and neighbors, responding in whatever way they can to fellow community members in crisis. The enormous burdens of care are, however, stretching communities to the breaking point. The lack of services to meet basic care needs not only contributes to daily suffering for those infected and affected by HIV/AIDS. HIV/AIDS-related morbidity also reduces the productivity of both people with HIV/AIDS and their care providers. It diverts scarce family resources as income shifts to health care needs and affects social stability as people are unable to work, parent, teach, or carry out other social responsibilities. Women bear the greatest burden of care – a load that negatively affects not only them but also their children and families. In most of the focus countries, families earn their subsistence through agriculture. Women are the major contributors to the agricultural workforce, feeding their families and earning a meager family income in the marketplace. When women’s health deteriorates, or when they must provide care to other family and community members, basic needs such as food security come under threat. Thus, the lack of consistent care services contributes to many of the most severe consequences of HIV/AIDS and perpetuates the vicious cycle of poverty and HIV/AIDS. The lack of strong care systems also fuels stigma and denial. As communities come under increasing strain, individuals who need care are increasingly left to fend for themselves. Rejection and discrimination feed fear and hopelessness and keep people from internalizing prevention messages or seeking testing and treatment. HIV/AIDS care, then, has an enormous role to play in reducing AIDS-related morbidity, relieving stress on families and mitigating consequences of disease. Many faith- and community-based groups have been the first organized responders to the demands for care and have worked to strengthen and support family and community care strategies. President Bush’s Emergency Plan will build on these and other opportunities, including national strategies to provide care for those infected and affected by HIV/AIDS, to expand, strengthen, and improve the quality and sustainability of programs to meet the needs of those now suffering, including orphans and vulnerable children. Care Objective: Care Strategies: 2. Build capacity for long-term sustainability of palliative care (basic health care and support services, including end-of-life care, for persons living with HIV/AIDS); build capacity for long-term sustainability of care services for orphans and vulnerable children 3. Advance policy initiatives that support basic health care and support, including palliative care, and care for orphans and vulnerable children 4. Collect strategic information to monitor and evaluate progress and ensure compliance with Emergency Plan policies and strategies This care goal includes both care for orphans and vulnerable children as well as basic health care and support, including symptom management, social and emotional support and end-of-life care, for persons living with HIV/AIDS. Because of programmatic differences these will be discussed separately below. Additionally, many of the strategies and interventions that apply to care (such as supply chain management) are described in detail elsewhere in this document. 1. Palliative Care 1. Rapidly scale up existing palliative care services Currently, palliative care needed by those living with HIV/AIDS is not widely available in the target countries. Most countries’ ministries of health support district health centers, clinics, and hospitals but few of these are adequately staffed or equipped to meet the basic health care needs of large numbers of people living with HIV/AIDS. Hospitals and clinics supported by faith-based and other nongovernmental organizations also often lack supplies and trained personnel needed to address non-ARV treatment for the HIV- infected. End-of-life care is now provided through some 40 hospice programs. These, by themselves, are inadequate to meet the need posed by this crisis. The number of people needing pain and symptom management as well as social, psychological, and practical support is simply too large. Home-based care programs have provided support to large numbers of individuals and families living with HIV/AIDS but rarely have the health care capacity or capability to provide minimum standards of palliative care. Principles of palliative care must be applied throughout the course of illness as well as at the end of life. Operational strategies for rapid scale-up of basic health care, including palliative and end-of-life care include:
Providing technical assistance and training to build and expand the capacity of existing care services Providing technical assistance and training to build and expand the capacity of health care personnel Integrating care services with current prevention and treatment programs Using U.S. Volunteers 2. Build capacity for long-term sustainability of palliative care As is the case for increasing long-term capacity for ART, increasing the availability of basic health care and support, including end-of-life care, will require a sustained partnership with ministries of health, nongovernmental organizations, professional associations, and training institutions. The provision of basic health care and support services, including end-of-life care, must be based upon an adequate supply of professionals – doctors, nurses, social workers, pharmacists, and others. These individuals must be trained and provided with on-going continuing education, in topics relevant to the care of HIV-infected patients. A great deal of attention must be given, therefore, to establishing long-term professional and institutional relationships so that ongoing professional communications and referrals can be supported. The twinning of U.S.-based institutions with African or Caribbean institutions (or African with Caribbean or African) offers an important means of establishing these types of relationships. The twinning mechanism that is part of the Emergency Plan will allow the creation and support of “centers of excellence” from which training, research, and talent can be diffused throughout the impacted regions. It is this ongoing sustained support for professional excellence that holds the key to increased capacity for care. Increasing long-term capacity for end-of-life care poses some special problems. End-of-life care is a well- established field in only a few areas of the world. It is only now gaining stature in the United States, and in Africa there are only two academically associated training programs in end-of-life care and only about 40 hospices in all of the focus countries. A strategy that will advance palliative care will involve, therefore, capacity building in African and Caribbean academic training institutions, aggressive in-service training, and continuing education. Partnerships in this regard between the U.S. and other developed nations where end-of-life care is well established may be especially useful. Establishment and support of twinned hospices will also provide support and opportunities for training and technical assistance. Operational strategies for building long-term sustainability for basic health care and support, including palliative care, include:
3. Advance policy initiatives that support basic health care and support, including palliative care
Policy reform must begin immediately to establish an environment that is conducive to the implementation of the basic health care and support and palliative care interventions and services described in this strategy. A key priority of the Emergency Plan will be to support implementation of good policies and effective legislation, in concert with national strategies and cognizant of local needs, particularly at the community level. Strategic approaches will include the following areas:
Human resources policy reform and development In addition, recruiting doctors, nurses, and other health care professionals from countries with a surplus may be a short-term strategy for increasing the number of care providers in a given country. The Emergency Plan will work with policymakers to support the changes in immigration policy necessary to implement this strategy in the focus countries. Difficulties in retaining trained health professionals are another common problem in these countries. Policies to counteract the “brain drain” will be encouraged, as will programs to increase provider job satisfaction. Some of this policy work must be done on a regional basis to counteract cross-border migration of health professionals. Policy reforms to increase availability of pain medications
4. Collect strategic information to monitor and evaluate progress and ensure compliance with Emergency Plan policies and strategies A strong evidence base will support the Emergency Plan to provide services to relieve suffering. Palliative and related care supports both those who receive and those who do not receive ART. Strategic information to support care must measure both home- and clinic- based activities. Outcomes will be measured through surveillance activities, especially population-based surveys. Provider information on care capacity, training, and services will provide data to monitor the progress of care programs on an ongoing basis. Targeted evaluations will identify best care practices. A management information system will provide the backbone for reporting information. The goals of providing care to 10 million individuals (palliative care and care for orphans and vulnerable children) over the five-year period will be measured using a variety of service-based statistics, surveys, and special studies. Indicators for measuring Emergency Plan progress toward achievement of care goals will include numbers of individuals served, numbers of persons trained to deliver care, and number of service delivery programs supported.
2. Care for Orphans and Vulnerable Children Children affected by HIV/AIDS have the same basic needs – economic and food security, education, nutrition, health, and emotional well-being – as other children, but the pandemic’s impact is eroding family and community capacity to meet these needs. AIDS is having a negative impact on the education, nutrition, health, economic and food security, and emotional well-being of children, including orphans and other children affected by AIDS. A variety of strategies must be used, depending on local context. Research has shown that resources – financial, human, public services – vary between and within countries. In many places, communities are mobilized and have systems in place to identify, protect, and provide basic necessities to the most vulnerable children. In other places – even in neighboring communities – the response from the community is minimal. Therefore, specific interventions must ultimately be based on identifying and strengthening already existing resources in a manner that does not undermine them. Areas of particular vulnerability in specific locations must be identified and interventions developed to strengthen existing community initiatives and fill the gaps. The exact mix of services provided and the number of beneficiaries will differ by location, existing resources, and types of vulnerability faced by the children in the intervention area. Donors, governments, and NGOs should recognize that families, communities, and children themselves are the front-line of response to HIV/AIDS. Traditional community mechanisms for orphan care, in many cases, have been overwhelmed by the sheer numbers of orphans, yet that number is set to rise as high as 25 million by 2010. Thus, developing and strengthening local structures is of primary importance in laying the foundation for future efforts that will support the growing numbers of children affected by HIV/AIDS. Funding and activities must support communities in ways that do not undermine community ownership of interventions or the long-term capacity of communities to respond. Outside assistance should accordingly focus on engaging in long- term partnerships to support, strengthen, and sustain ongoing community initiatives through training and technical assistance, organizational development, and sustained financial and material support. Two other overarching principles apply in President Bush’s Emergency Plan’s strategic approach to care for orphans and other vulnerable children. Because targeting specific categories of children can lead to increased stigmatization and discrimination, the Emergency Plan specifically identifies “orphans and other vulnerable children” as beneficiaries of care. Directing program efforts exclusively to children with a parent or parents who have HIV infection or have died of AIDS is both unrealistic and detrimental to those children. In addition, efforts should not focus solely on children whose parent or parents have already died. Long before they become orphans, children experience severe distress as a result of living with – and often caring for – a terminally ill parent. Throughout the world, communities have mobilized and developed systems to identify, prioritize, and care for those who are most vulnerable. These systems, where effective and sustainable, will be supported.
In some cases, however, institution-based activities are necessary. For abandoned children or children living on the street, an institution might be the only alternative to death from exposure and starvation. The challenge is to develop better alternatives, such as emergency and long-term foster care and local adoption. In addition, there has been an increase in facili- ty-based palliative care for children living with White House Photo Office HIV/AIDS. Many of these institutions are also reaching out to provide care in local communities. The Emergency Plan will help build, strengthen, and improve the quality and sustainability of programs to meet the needs of orphans and vulnerable children through rapid scale-up, capacity building, strengthening the enabling environment, and tracking progress and establishing best practices. 1. Rapidly scale up care services for orphans and vulnerable children Rapid scale-up of services and support systems for orphans and other vulnerable children will rely on improving the quality and expanding the reach of existing responses. Rapid scale-up will be guided by the following operational strategies:
Strengthening the capacity of families to cope with their problems Mobilizing and strengthening community-based responses Integrating care services with existing prevention and care programs 2. Build capacity for long-term sustainability of care services for orphans and vulnerable children Given the current disease burden in highly impacted countries, the number of orphans will continue to rise over the next decade. Thus, President Bush’s Emergency Plan will pursue the following strategies in building capacity for sustainable quality care programs:
Strengthening the organizational capacity of community- and faith-based organizations to address the needs of orphans and other vulnerable children Strengthening early interventions with at-risk youth Promoting collaboration and coordination among partners for a long-term response Identifying new public-private partnership opportunities 3. Advance policy initiatives that support care for orphans and vulnerable children President Bush’s Emergency Plan will work with government ministries and other organizations in focus countries to support initiatives to institute policy, program, and operational reforms, including reforms to ensure access to basic social services and to create special protection and care measures for children outside families and communities. Activities will promote supportive environments for vulnerable children and include advocacy for basic legal protections, transformation of public perceptions of HIV/AIDS, and strengthened school-based HIV prevention and care programs. To support the Emergency Plan programs that will meet the needs of millions of orphans and vulnerable children, some critical policy areas must be addressed. These policy areas cover issues related to:
4. Collect strategic information to monitor and evaluate progress and ensure compliance with Emergency Plan policies and strategies There is a long history of measuring care and support for orphans and vulnerable children. This history will form the basis of measuring progress toward achieving Emergency Plan goals in support of these children. Measurement will include:
The goal is to provide strategic information to programs, countries, donors, and the U.S. Government to strengthen the accountability and improvement of programs for orphans and vulnerable children. This strategic information strategy will support evaluation of programs on a timely basis, making it possible to discard models that are not working and to identify the best practices that contribute towards the care goals of President Bush’s Emergency Plan. |
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![Mrs. Bush gives choir members of the Uganda Childrens Choir a tour of the White House after they gave a performance [White House photo office]](https://webarchive.library.unt.edu/eot2008/20081026233451im_/http://www.state.gov/cms_images/chapter_6_250.jpg)
The care activities of President Bush’s Emergency Plan will comprise palliative care for people with HIV/AIDS and care for children orphaned by AIDS and other vulnerable children. Palliative care spans a continuum of care from the time a person is diagnosed with HIV infection until death. The continuum of palliative care includes routine clinical care to evaluate the need for symptom relief (from diarrhea or headache, for example); treatment for HIV/AIDS- related diseases such as tuberculosis and opportunistic infections; preparing people for antiretroviral therapy where that is possible; and, when treatment is not available or has failed, compassionate end-of- life care.
![African child with umbrella [White House photo office]](https://webarchive.library.unt.edu/eot2008/20081026233451im_/http://www.state.gov/cms_images/chapter_6.1_250.jpg)
Finally, President Bush’s Emergency Plan will seek where possible to support family and community mechanisms as opposed to institutional care. Alternatives to traditional orphanages, such as com- munity-based resource centers, continue to evolve in response to the massive number of orphans left behind by the AIDS epidemic. These centers help families continue to support children within the community, providing support groups, counseling, temporary medical care for HIV-infected children, training in parenting skills, skills training programs for older children, and daycare for parents or foster parents who need relief. They can also prevent children from entering the worst forms of child labor.
