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close this bookThe Status and Trends of the HIV/AIDS Epidemics in the World MAP Provisional Report (UNAIDS, 1998, 32 p.)
View the document(introduction...)
View the documentMonitoring the AIDS Pandemic (MAP) Network
View the documentPrevious Reports Produced by MAP
View the documentAcknowledgments
View the document1. Introduction
View the document2. The State of the HIV/AIDS Epidemic
View the document3. Migration and HIV
View the document4. Inequities in Care and Support for Those Infected With and Affected by HIV
View the document5. Mother to Child HIV Transmission: The Potential Global Impact
View the document6. HIV Transmission in the Health Care Setting
View the document7. Orphans
View the document8. Interactions Between TB and HIV programmes
View the document9. The Global Map of Neglected Behaviours: Knowledge and Action Gaps
View the document10. General Recommendations
View the document11. List of Participants

4. Inequities in Care and Support for Those Infected With and Affected by HIV

As HIV/AIDS continues to spread unabated in most developing regions of the world, one of the most profound challenges manifested in this pandemic is how to care for the millions of people infected with and affected by the virus. The lack of options for care is further complicated by the lack of a dynamic response in most professionals toward realizing the provision of holistic care, including medical treatment, psychosocial support services and linkages between the clinical and home-care settings across the care continuum. The time when individuals infected with HIV, no matter where they live, are able to rest assured that while they face chronic and possibly terminal illness, they will have access to fully knowledgeable, adequate and sustainable treatment and other forms of care over the potential long-term is not yet in sight.

Daunted by the lack of resources and other structural impediments to organized care-for HIV, many in positions of power still shy away from the topic of care. The increase in the number of people in need of care globally, the limited coping capacity of health services, and the recognition that care needs go well beyond clinical therapies to psychosocial support and community-based care for the burgeoning populations of the HIV/AIDS-infected, especially in sub-Saharan Africa, can and do frighten some donors and governments.

Yet the right to health is a basic human right. HIV-positive individuals must be able to receive a full-spectrum of care. While rights do not lose their importance in low-resource settings, the reality is that they often are not fully protected. The mandate to protect health, to improve health, to care for those in ill health is a growing dilemma around the world, especially where masses of people are infected with or affected by HIV.

Medical, nursing and social support personnel in many countries, already stressed by the burden of other common, chronic diseases of public health that are difficult to care for, are frightened by confronting HIV/AIDS. Woefully inadequate services compounded by the fear of infection arm these workers with judgmental attitudes, moral impunity, and lack of caring behaviours. The obvious result is poor medical care for those with diagnosed or suspected HIV infection; consequently, comprehensive holistic treatment in these settings is not offered. In some countries, especially in east and southern Africa, the problem is exacerbated by the high percentage of health care providers in urban areas living with HIV themselves, leading to an extremely high proportion of patients per health care worker in clinic and hospital settings.

Knowing of the problems encountered in hospitals, many, if not most, known or self-suspected HIV-positive individuals frequently turn to health care providers only in the terminal stage of their illness. Others choose to never attend these clinics at all. By not availing themselves of voluntary counseling and testing at an early entry point, preventive therapies, or not being given access to these services, many find themselves unable to resist other opportunistic infections. The result: overflowing hospitals, some with 60 percent of their beds in medical wards accommodating the HIV-infected or terminally ill AIDS patients. Complicating the situation further is the lack of standardized HIV/AIDS treatment and management protocols, safety precautions, safe blood, and often other medical supplies. Limited or complete lack of counseling services and in many cases lack of confidentiality provides patients with few, if any, positive psychological or emotional benefits of clinic visits. Many patients, especially women and in particular adolescent girls, can fear stigmatization and community ostracization from such a lack of confidentiality and, as a result, do not come forward for HIV testing or care.

Already bearing the burden of socioeconomic and political inequality, women who are HIV-positive may have less access to health care and psychosocial services than men. They also have less free time to access what is available and less expendable income to devote to their own comprehensive health care. Due to their low social status, lesser educational background, and generally lower level of self-esteem, many women cannot practice health-seeking behaviour, or are simply unaware of their potential for HIV infection. Frequently, their families and communities expect them to put the care needs of their spouses and children ahead of their own. Attitudes toward HIV-positive women can be especially discriminatory, even violent, with domestic violence not uncommon. When it comes to HIV care and support, the lack of access to such services for women may shorten their lives and tends to diminish the overall productivity of the community. However, there is a need for more data on these topics for more responsive policy formulation and better programmatic planning.

As well as care and support barriers to women, adolescents are ill-positioned for care and psychosocial support, especially if they are HIV-positive. At the time of their lives when they most need the support of parents, peer groups and in some cases medical care and psychosocial support from professionals, their concerns, which may relate to their future survival, may not be taken seriously. Adolescent girls, who are generally at the height of human emotional vulnerability, are in the worst societal position and can be ridiculed for asking the type of questions, which if answered comprehensively, can save their lives. In Nepal, where more than 200,000 girls are estimated to have been trafficked to India for sex work in brothels, a growing number are returning to their home villages HIV-positive. In many of the rural areas of the country, health care is scarce; to get any treatment at all, the girls need familial support, which can in itself be impossible to access when care needs are related to infection with HIV.

Underreporting of AIDS cases as well as HIV infections by health administrators is a large hurdle that seriously reduces the necessary basis for realistic design and planning of health care structures, staff and basic support systems. Caseload numbers are needed for costs to be estimated accurately, showing the benefits for all of holistic, community-based programmes linked to hospital care. For this effort to work, the voluntary diagnoses, and the provision of treatments, other forms of care and support for all who are HIV-positive, including the most marginalized segments of society, such as drug users, need to be respected equally with those for individuals whose social acceptability is unquestioned. If access to care and support is measured, a real picture of the HIV situational status will emerge relative to local environments, which are suitable for associating real costs. With the emergence of powerful but complex regimens and also the evidence of feasible and affordable preventive therapies and opportunistic infection prevention, the chance to introduce holistic therapies through clinical attendance is increasing. All communities need to recognize that antiretroviral therapies, available to all groups in some industrialized and middle income countries, are extremely expensive and not a panacea. Adherence to the complicated regimens is a universal problem. The short-term side-effects of many of these regimens are just starting to become known, and the long-term effects are completely unknown. Additionally, some populations are finding it difficult to return to lives they thought they had lost; their need for psychological support during this period has grown, not lessened. More data are needed to track the positive and negative aspects of these therapies, as well as the estimated all-inclusive, long-term costs.

The flowering of some care and support programmes in non-industrialized countries proves that, with courage, communities can create programmes to provide safety nets to those with HIV/AIDS even in the most dire economic settings. Linkages of hospital and community-based HIV/AIDS care and support need examination, wide dissemination of pertinent information and replication internationally. Linking clinical, community- and home-based programmes by taking a participatory approach to HIV/AIDS care and support options will facilitate the betterment of both and, likewise, provide the type of caring and sharing that needs to be borne by and balanced among community networks at this time when individuals and families are increasingly unable to bear the burden of HIV/AIDS alone. Both access to and the quality of HIV care and support services need to be measured and monitored to ensure overall adequacy and sustainability, however comprehensive the response.